social work research approaches

Social Work Research Methods That Drive the Practice

A social worker surveys a community member.

Social workers advocate for the well-being of individuals, families and communities. But how do social workers know what interventions are needed to help an individual? How do they assess whether a treatment plan is working? What do social workers use to write evidence-based policy?

Social work involves research-informed practice and practice-informed research. At every level, social workers need to know objective facts about the populations they serve, the efficacy of their interventions and the likelihood that their policies will improve lives. A variety of social work research methods make that possible.

Data-Driven Work

Data is a collection of facts used for reference and analysis. In a field as broad as social work, data comes in many forms.

Quantitative vs. Qualitative

As with any research, social work research involves both quantitative and qualitative studies.

Quantitative Research

Answers to questions like these can help social workers know about the populations they serve — or hope to serve in the future.

How many students currently receive reduced-price school lunches in the local school district?
How many hours per week does a specific individual consume digital media?
How frequently did community members access a specific medical service last year?

Quantitative data — facts that can be measured and expressed numerically — are crucial for social work.

Quantitative research has advantages for social scientists. Such research can be more generalizable to large populations, as it uses specific sampling methods and lends itself to large datasets. It can provide important descriptive statistics about a specific population. Furthermore, by operationalizing variables, it can help social workers easily compare similar datasets with one another.

Qualitative Research

Qualitative data — facts that cannot be measured or expressed in terms of mere numbers or counts — offer rich insights into individuals, groups and societies. It can be collected via interviews and observations.

What attitudes do students have toward the reduced-price school lunch program?
What strategies do individuals use to moderate their weekly digital media consumption?
What factors made community members more or less likely to access a specific medical service last year?

Qualitative research can thereby provide a textured view of social contexts and systems that may not have been possible with quantitative methods. Plus, it may even suggest new lines of inquiry for social work research.

Mixed Methods Research

Combining quantitative and qualitative methods into a single study is known as mixed methods research. This form of research has gained popularity in the study of social sciences, according to a 2019 report in the academic journal Theory and Society. Since quantitative and qualitative methods answer different questions, merging them into a single study can balance the limitations of each and potentially produce more in-depth findings.

However, mixed methods research is not without its drawbacks. Combining research methods increases the complexity of a study and generally requires a higher level of expertise to collect, analyze and interpret the data. It also requires a greater level of effort, time and often money.

The Importance of Research Design

Data-driven practice plays an essential role in social work. Unlike philanthropists and altruistic volunteers, social workers are obligated to operate from a scientific knowledge base.

To know whether their programs are effective, social workers must conduct research to determine results, aggregate those results into comprehensible data, analyze and interpret their findings, and use evidence to justify next steps.

Employing the proper design ensures that any evidence obtained during research enables social workers to reliably answer their research questions.

Research Methods in Social Work

The various social work research methods have specific benefits and limitations determined by context. Common research methods include surveys, program evaluations, needs assessments, randomized controlled trials, descriptive studies and single-system designs.

Surveys involve a hypothesis and a series of questions in order to test that hypothesis. Social work researchers will send out a survey, receive responses, aggregate the results, analyze the data, and form conclusions based on trends.

Surveys are one of the most common research methods social workers use — and for good reason. They tend to be relatively simple and are usually affordable. However, surveys generally require large participant groups, and self-reports from survey respondents are not always reliable.

Program Evaluations

Social workers ally with all sorts of programs: after-school programs, government initiatives, nonprofit projects and private programs, for example.

Crucially, social workers must evaluate a program’s effectiveness in order to determine whether the program is meeting its goals and what improvements can be made to better serve the program’s target population.

Evidence-based programming helps everyone save money and time, and comparing programs with one another can help social workers make decisions about how to structure new initiatives. Evaluating programs becomes complicated, however, when programs have multiple goal metrics, some of which may be vague or difficult to assess (e.g., “we aim to promote the well-being of our community”).

Needs Assessments

Social workers use needs assessments to identify services and necessities that a population lacks access to.

Common social work populations that researchers may perform needs assessments on include:

People in a specific income group
Everyone in a specific geographic region
A specific ethnic group
People in a specific age group

In the field, a social worker may use a combination of methods (e.g., surveys and descriptive studies) to learn more about a specific population or program. Social workers look for gaps between the actual context and a population’s or individual’s “wants” or desires.

For example, a social worker could conduct a needs assessment with an individual with cancer trying to navigate the complex medical-industrial system. The social worker may ask the client questions about the number of hours they spend scheduling doctor’s appointments, commuting and managing their many medications. After learning more about the specific client needs, the social worker can identify opportunities for improvements in an updated care plan.

In policy and program development, social workers conduct needs assessments to determine where and how to effect change on a much larger scale. Integral to social work at all levels, needs assessments reveal crucial information about a population’s needs to researchers, policymakers and other stakeholders. Needs assessments may fall short, however, in revealing the root causes of those needs (e.g., structural racism).

Randomized Controlled Trials

Randomized controlled trials are studies in which a randomly selected group is subjected to a variable (e.g., a specific stimulus or treatment) and a control group is not. Social workers then measure and compare the results of the randomized group with the control group in order to glean insights about the effectiveness of a particular intervention or treatment.

Randomized controlled trials are easily reproducible and highly measurable. They’re useful when results are easily quantifiable. However, this method is less helpful when results are not easily quantifiable (i.e., when rich data such as narratives and on-the-ground observations are needed).

Descriptive Studies

Descriptive studies immerse the researcher in another context or culture to study specific participant practices or ways of living. Descriptive studies, including descriptive ethnographic studies, may overlap with and include other research methods:

Informant interviews
Census data
Observation

By using descriptive studies, researchers may glean a richer, deeper understanding of a nuanced culture or group on-site. The main limitations of this research method are that it tends to be time-consuming and expensive.

Single-System Designs

Unlike most medical studies, which involve testing a drug or treatment on two groups — an experimental group that receives the drug/treatment and a control group that does not — single-system designs allow researchers to study just one group (e.g., an individual or family).

Single-system designs typically entail studying a single group over a long period of time and may involve assessing the group’s response to multiple variables.

For example, consider a study on how media consumption affects a person’s mood. One way to test a hypothesis that consuming media correlates with low mood would be to observe two groups: a control group (no media) and an experimental group (two hours of media per day). When employing a single-system design, however, researchers would observe a single participant as they watch two hours of media per day for one week and then four hours per day of media the next week.

These designs allow researchers to test multiple variables over a longer period of time. However, similar to descriptive studies, single-system designs can be fairly time-consuming and costly.

Learn More About Social Work Research Methods

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Open Social Work, Graduate Research Methods in Social Work: A Project-Based Approach

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In This Article Expand or collapse the "in this article" section Social Work Research Methods

Introduction.

History of Social Work Research Methods
Feasibility Issues Influencing the Research Process
Measurement Methods
Existing Scales
Group Experimental and Quasi-Experimental Designs for Evaluating Outcome
Single-System Designs for Evaluating Outcome
Program Evaluation
Surveys and Sampling
Introductory Statistics Texts
Advanced Aspects of Inferential Statistics
Qualitative Research Methods
Qualitative Data Analysis
Historical Research Methods
Meta-Analysis and Systematic Reviews
Research Ethics
Culturally Competent Research Methods
Teaching Social Work Research Methods

Other Subject Areas

Forthcoming articles expand or collapse the "forthcoming articles" section.

Abolitionist Perspectives in Social Work
Randomized Controlled Trials in Social Work
Social Work Practice with Transgender and Gender Expansive Youth
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Social Work Research Methods by Allen Rubin LAST REVIEWED: 14 December 2009 LAST MODIFIED: 14 December 2009 DOI: 10.1093/obo/9780195389678-0008

Social work research means conducting an investigation in accordance with the scientific method. The aim of social work research is to build the social work knowledge base in order to solve practical problems in social work practice or social policy. Investigating phenomena in accordance with the scientific method requires maximal adherence to empirical principles, such as basing conclusions on observations that have been gathered in a systematic, comprehensive, and objective fashion. The resources in this entry discuss how to do that as well as how to utilize and teach research methods in social work. Other professions and disciplines commonly produce applied research that can guide social policy or social work practice. Yet no commonly accepted distinction exists at this time between social work research methods and research methods in allied fields relevant to social work. Consequently useful references pertaining to research methods in allied fields that can be applied to social work research are included in this entry.

This section includes basic textbooks that are used in courses on social work research methods. Considerable variation exists between textbooks on the broad topic of social work research methods. Some are comprehensive and delve into topics deeply and at a more advanced level than others. That variation is due in part to the different needs of instructors at the undergraduate and graduate levels of social work education. Most instructors at the undergraduate level prefer shorter and relatively simplified texts; however, some instructors teaching introductory master’s courses on research prefer such texts too. The texts in this section that might best fit their preferences are by Yegidis and Weinbach 2009 and Rubin and Babbie 2007 . The remaining books might fit the needs of instructors at both levels who prefer a more comprehensive and deeper coverage of research methods. Among them Rubin and Babbie 2008 is perhaps the most extensive and is often used at the doctoral level as well as the master’s and undergraduate levels. Also extensive are Drake and Jonson-Reid 2007 , Grinnell and Unrau 2007 , Kreuger and Neuman 2006 , and Thyer 2001 . What distinguishes Drake and Jonson-Reid 2007 is its heavy inclusion of statistical and Statistical Package for the Social Sciences (SPSS) content integrated with each chapter. Grinnell and Unrau 2007 and Thyer 2001 are unique in that they are edited volumes with different authors for each chapter. Kreuger and Neuman 2006 takes Neuman’s social sciences research text and adapts it to social work. The Practitioner’s Guide to Using Research for Evidence-based Practice ( Rubin 2007 ) emphasizes the critical appraisal of research, covering basic research methods content in a relatively simplified format for instructors who want to teach research methods as part of the evidence-based practice process instead of with the aim of teaching students how to produce research.

Drake, Brett, and Melissa Jonson-Reid. 2007. Social work research methods: From conceptualization to dissemination . Boston: Allyn and Bacon.

This introductory text is distinguished by its use of many evidence-based practice examples and its heavy coverage of statistical and computer analysis of data.

Grinnell, Richard M., and Yvonne A. Unrau, eds. 2007. Social work research and evaluation: Quantitative and qualitative approaches . 8th ed. New York: Oxford Univ. Press.

Contains chapters written by different authors, each focusing on a comprehensive range of social work research topics.

Kreuger, Larry W., and W. Lawrence Neuman. 2006. Social work research methods: Qualitative and quantitative applications . Boston: Pearson, Allyn, and Bacon.

An adaptation to social work of Neuman's social sciences research methods text. Its framework emphasizes comparing quantitative and qualitative approaches. Despite its title, quantitative methods receive more attention than qualitative methods, although it does contain considerable qualitative content.

Rubin, Allen. 2007. Practitioner’s guide to using research for evidence-based practice . Hoboken, NJ: Wiley.

This text focuses on understanding quantitative and qualitative research methods and designs for the purpose of appraising research as part of the evidence-based practice process. It also includes chapters on instruments for assessment and monitoring practice outcomes. It can be used at the graduate or undergraduate level.

Rubin, Allen, and Earl R. Babbie. 2007. Essential research methods for social work . Belmont, CA: Thomson Brooks Cole.

This is a shorter and less advanced version of Rubin and Babbie 2008 . It can be used for research methods courses at the undergraduate or master's levels of social work education.

Rubin, Allen, and Earl R. Babbie. Research Methods for Social Work . 6th ed. Belmont, CA: Thomson Brooks Cole, 2008.

This comprehensive text focuses on producing quantitative and qualitative research as well as utilizing such research as part of the evidence-based practice process. It is widely used for teaching research methods courses at the undergraduate, master’s, and doctoral levels of social work education.

Thyer, Bruce A., ed. 2001 The handbook of social work research methods . Thousand Oaks, CA: Sage.

This comprehensive compendium includes twenty-nine chapters written by esteemed leaders in social work research. It covers quantitative and qualitative methods as well as general issues.

Yegidis, Bonnie L., and Robert W. Weinbach. 2009. Research methods for social workers . 6th ed. Boston: Allyn and Bacon.

This introductory paperback text covers a broad range of social work research methods and does so in a briefer fashion than most lengthier, hardcover introductory research methods texts.

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[185.148.24.167]
185.148.24.167

Foundations of Social Work Research

(4 reviews)

Rebecca L. Mauldin

ISBN 13: 9781648169915

Publisher: Mavs Open Press

Language: English

Formats Available

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Learn more about reviews.

Reviewed by LaToya Smith-Jones, Adjunct Professor, University of Texas at Arlington on 3/26/24

Comprehensiveness rating: 5 see less

The textbook covers various topics that are familiar to the Social Work profession. There are relatable examples given within the book, which allow Social Work students to understand discussions through the lens of an actual practitioner. Each section provides an area where research vocabulary is listed and reviewed, as well as examples to deepen the understanding of the vocabulary used.

Content Accuracy rating: 5

The information presented in the textbook is presented with accuracy. Bias was not noticed within the text.

Relevance/Longevity rating: 5

The information presented within the textbook was up-to-date. Classical studies were also included in the textbook. The classical studies allow the students to understand the historical influence regarding the research process.

Clarity rating: 5

The textbook provides examples and a separate vocabulary section in order to understand the jargon and technical terminology. individuals who do not have a research background will be able to comprehend the information written.

Consistency rating: 5

The textbook is consistent regarding terminology and framework. Each section builds upon the previous section.

Modularity rating: 5

Each section is broken up according to the topic of the chapter. Each chapter is broken up in sections, which allows for an easier read.

Organization/Structure/Flow rating: 5

The chapters are presented in a logical and clear fashion. The information presented within the textbook builds upon itself. Students are first introduced to background information regarding the topic and then they are given information regarding the application of the information shared.

Interface rating: 5

There were not any interface issues.

Grammatical Errors rating: 5

There were not any grammatical errors noted.

Cultural Relevance rating: 5

Information within the text was inclusive and included examples of various ethnicities and backgrounds.

The textbook is excellent to use for students who do not have a research background. The manner in which the information is presented and laid out assists with aiding students' understanding.

Reviewed by Quentin Maynard, Assistant Professor, University of Southern Indiana on 11/30/22

This text covers topics that social work students need to understand to be consumers of research. The author and contributors include current real work examples to help emphasize the different topics. Integrating the chapter on Real World Research throughout the text might help emphasize to students that engaging in research is necessary to our profession, even as practitioners.

The content was accurate and error-free.

The content of the text was up-to-date and included information relevant to social work research. Since the main author solicited contributions from colleagues at their institution, updates and changes would likely be relatively straightforward.

The book seemed accessible for individuals with limited research experience. Key words were defined in the text and included in a glossary at the end of each section and the text.

The text was consistent in style and organization. Chapter subsections have specific learning objectives allowing students to know what will be covered in each chapter. Doing this reduces bloat and increases clarity for readers.

The text did not appear to be structured in a way that was overwhelming or difficult to follow.

The structure of the book was logical.

The digital pdf and the online versions of the text were intuitive and easy to navigate. I did not notice any issues with the interface in either format.

No writing or grammar errors noted.

The text is culturally sensitive. It includes a content advisory at the beginning of each chapter which allows students to be aware of specific topics (e.g., racism, sexism, and poverty) discussed or mentioned in the chapter. While this text was adapted for students at a specific university, the authors include topics that reach much farther than that audience. The examples included cover a diverse set of people and situations.

This is a comprehensive text that allows students the opportunity to learn how to be consumers of social work research. While practice evaluation might not be the scope of this text, other than the chapter on Real World Research, including discussions about how students might apply the concepts of each chapter in social work practice. The structure of the book allows students to see the research that their professors are engaging in and might make research more accessible to social work students and practitioners

Reviewed by Matt Walsh, Assistant Professor of Social Work, Marian University on 12/30/21

This textbook covers all the aspects of research you would expect for an introduction to social work research. It uses classic examples of past research to highlight the importance of ethics in research. It also does a good job of discussing both quantitative and qualitative research as well as single system designs and program evaluation. My one critique as someone who does qualitative research is that it mentions the importance of trustworthiness and rigor in qualitative research but does not mention how a research can achieve this. However, it does go into other elements like coding and it would not be hard to provide student with supplemental materials about memoing or peer debriefing as examples and to be fair, it is hard to put everything in just one chapter.

All components are accurately described and well-written. The glossary at the end of each section is helpful for key words. The text appears to be error-free and unbiased.

There are links to recent examples which highlights the real world aspect of research.

This text is clear in its description of research and its major components. Certain aspects like causality get a little advanced for a introduction to research book but there are good visual to aid in students' understanding of some of the more complicated concepts. (Please note that I am reviewing this with BSW students in mind, MSW students may not find some of these sections as overwhelming as I suspect my students might).

The book is very well structured and consistent throughout.

The text is well structured and organized as a whole and in terms of each chapter and each section with the chapters.

The topics follow the order of most other foundational research books I have seen and have a logical flow to them.

I did not find any interface issues.

I could not see any grammatical errors.

There are good examples throughout that display an effort to have inclusivity, diversity, and equity in this text.

I feel like this book would provide students with a good understanding about research and could be used interchangeably with other foundational/introduction books on the market, especially if the professor is familiar with teaching research and has already established a good foundation (quizzes, lecture slides, assignments, activities, etc.).

Reviewed by Vivian Miller, Assistant Professor in Social Work, Bowling Green State University on 1/5/21

The text Foundations of Social Work Research covers social work research comprehensively and appropriately. Across twelve chapters, the author begins by introducing research, the science behind research and how this translates to the profession of social work, and the importance of understanding research as it applies to social work practice across all system levels. In addition to comprehensive chapters, the text contains a glossary, practice behavior indices, bibliography, derivative notes, and links by each chapter.

This text is an accurate text that is error free. This text is extremely well-written and includes real-life examples, drawing on written contributions from social work faculty across practice settings and populations, as well as students at the masters and doctoral levels.

Much of research methods and the process is overall static, however the author does an incredible job to provide timely, relevant, and applicable examples throughout the text to ensure that this version will not be obsolete within a short period of time.

This text is clearly written and is easy to move through. This text contains chapters and sub-chapters. I’d recommend this book for a higher-level undergraduate program or graduate program (e.g., MSW), as there is technical terminology used. Additionally, the author provides a glossary at the back of the text, hyperlinked to each chapter on the web-version. Moreover, there are definitions highlighted at center page throughout the text.

This text is very consistent. Chapters build on one another and are written in clear order.

The use of subheadings throughout allows this text to be separated into smaller reading sections. For instance, if an instructor wanted to assign reading for “Probability sampling,” this topic can be readily extracted from the full text. A student can understand this topic area despite being separated from the text as context is provided to the reader in each sub-chapter. The use of bolded words, images, examples, and hyperlinks throughout make the text easy to separate and digest.

This text is very well-organized and moves through each section in a step-wise process building on each previous content area.

There are no interface issues in the text. Images display well, as well as key takeaway and glossary charts throughout each chapter.

The text contains no grammatical errors.

This text is culturally sensitive. Examples across all system levels (e.g., micro, messo, and macro) are inclusive of a variety of races, ethnicities, and backgrounds.

Highly recommend this text for a Social Work research course.

Chapter One: Introduction to research
Chapter Two: Linking methods with theory
Chapter Three: Ethics in social work research
Chapter Four: Design and causality
Chapter Five: Defining and measuring concepts
Chapter Six: Sampling
Chapter Seven: Survey research
Chapter Eight: Experimental design
Chapter Nine: Unique features of qualitative research
Chapter Ten: Unobtrusive research
Chapter Eleven: Real-world research
Chapter Twelve: Reporting research

Ancillary Material

About the book.

This textbook was created to provide an introduction to research methods for BSW and MSW students, with particular emphasis on research and practice relevant to students at the University of Texas at Arlington. It provides an introduction to social work students to help evaluate research for evidence-based practice and design social work research projects. It can be used with its companion, A Guidebook for Social Work Literature Reviews and Research Questions by Rebecca L. Mauldin and Matthew DeCarlo, or as a stand-alone textbook.

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Rebecca L. Mauldin , Ph.D

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Home / Social Work Resources / Theories & Practice Models Used in Social Work

Theories & Practice Models Used in Social Work

Private practices. Mental health clinics. Child welfare service agencies. Occupying a variety of professional settings, social workers are united by a shared mission: helping others live better lives.

In order to do that, they must first understand what makes their clients tick. As a social worker, studying different social work theories and social work practice models can help to bring you closer to your clients — equipping you with actionable insights that inform empathetic, evidence-based service.

Inspired by the scientific method, social work theories uncover the why of human behavior, while social work practice models reveal how you can effect change for individuals, couples, families, and communities at large.

If you’re looking for Social Work Practice Models, jump down here.

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List of Theories Used in Social Work

As a social worker, more knowledge can lead to a more informed approach, and more effective client interactions. Here, we’ll dig into decades of research to share a comprehensive set of social work theories and practice models, including:

Systems Theory

Behaviorism and social learning theory, psychodynamic theory, developmental perspective, rational choice perspective, conflict theory, ecological systems theory, family systems theory, contingency theory.

The 1950s were a decade of global innovation. From barcodes to credit cards, commercial computers to video cassette records, cutting-edge inventions were taking the stage. Around the same time, a new social work development was making its debut: systems theory.

Inspired by major advancements in the fields of psychology, communication, and psychiatry, systems theory is based on the belief that individuals don’t operate in isolation . Rather, the theory positions people as products of complex systems: influenced by a variety of external factors, including other individuals, families, communities, and organizations.

Learn more about System Theory in Social Work.

Developed by the American psychologist Urie Bronfenbrenner , ecological systems theory emphasizes the importance of observing people in multiple environments, or systems, to fully understand their behavior. In his theory, Bronfenbrenner outlines five distinct systems:

The microsystem is someone’s small, immediate environment. For a child, this usually includes direct family, teachers, peers, and caregivers. Relationships in the microsystem are bi-directional—for instance, a parent treating a child with kindness will likely affect how the child treats the parent in return. For this reason, some consider the microsystem to be the most influential level of the ecological systems theory.
The mesosystem consists of interactions between the different parts of a person’s microsystem. For instance, between a child’s parent and teacher. A social worker using this theory in everyday practice might ask themselves: “Are the different parts of my client’s microsystem working together towards a positive impact or working against each other?”
The exosystem is an individual’s indirect environment. Consider a child whose father is an active duty soldier. Though the military isn’t a part of that child’s direct environment, it still influences them mentally and emotionally, and can impact their thoughts, relationships, and behavior.
The macrosystem is a society’s overarching set of beliefs, values, and norms. This system often has a cascading effect on behavior in all the other systems, serving as a filter through which an individual interprets their experiences. For instance, a child might grow up thinking their socioeconomic status is a limiting factor in life. This macrosystem-level belief may cause them to behave differently in school — for positive or for negative, depending on the individual.
The chronosystem includes major changes that influence an individual’s development overtime. This could include changes in family structure, employment status, or address, as well as large societal changes like wars, civil rights movements, or economic flux.

Family systems theory was developed in the mid-1950s, while American psychiatrist Murray Bowen was working at the National Institute of Mental Health . Based on his knowledge of family patterns and systems theory, Bowen believed that the personalities, emotions, and behaviors of grown individuals could be traced back to their family interactions. The family, he suggested, is an emotional unit and can therefore play a formative role in development.

Within social work, professionals may enable families to try out different ways of doing things, such as teaching a parent on how to maintain appropriate boundaries with their child. The family is identified as a social system and therapy engages that concept to support the growth of clients.

Contingency theory explains that individual outcomes are contingent on a variety of specific situational factors. In the realm of social work, contingency theory can inspire you to seek understanding by considering all of the internal and external influences that are contributing to a client’s problem.

Systems Theory Related Resources

American Academy of Child and Adolescent Psychiatry (AACAP) – Systems-Based Practice
Bronfenbrenner Center for Translational Research
The Bowen Center
The Ecology of Human Development by Urie Bronfenbrenner
Effective Social Work with Children, Young People and Families: Putting Systems Theory into Practice
GoodTherapy – Systems Theory/Therapy
New England Association for Family and Systemic Therapy (NEAFAST) – What is Systems Theory?
Psychology Today – Family Systems Theory
Systems Theory in Social Work

Behaviorism
Cognitive Theory

What drives human behavior? It’s a question that’s been asked for decades on end — and one that’s particularly relevant to the field of social work. Both behaviorism and social learning theory provide social workers with a useful framework for understanding clients.

By learning how past experiences influence present-day behavior, you can develop a research-backed approach to providing targeted care.

Social learning theory was developed by the influential Stanford University psychologist Albert Bandura. In 1961, Bandura conducted his most widely known experiment: the Bobo doll study . In this experiment, children watched an adult shout at and beat a Bobo doll on television.

Later that same day, the children were left to play in a room containing a Bobo doll — and those who’d seen the film were more likely to torment the doll, imitating the behavior they’d been exposed to earlier. As a result, social learning theory posits that learning occurs through observation and imitation.

Learn more about Social Learning Theory in Social Work.

Behaviorism and Behavioral Theory

According to behaviorism, all behaviors are acquired through conditioning. By adding in a conditioned stimulus before an unconditioned stimulus that leads to an unconditioned response, the conditioned stimulus will lead to a new conditioned response. In his famous experiment, Russian psychologist Ivan Pavlov conditioned dogs to produce saliva at the sound of a metronome. By consistently introducing the metronome before feeding time, he found that the sound alone would lead to salivation — in anticipation of feeding time.

Similarly, humans can be conditioned to respond to specific stimuli. For instance, a child may work harder in school if they are promised a reward for receiving good grades.

Cognitive Theory in Social Work

Cognitive theory uncovers how a person’s thinking influences behavior. This theory places emphasis on dysfunctional thought patterns that influence problematic behaviors — what we tell ourselves after an event. Social works may utilize this approach in therapy sessions to link dysfunctional thoughts that occur after and before behaviors.

Behaviorism and Social Learning Theory Related Resources

American Psychological Association (APA) – “Albert Bandura to receive National Medal of Science”
Association for Psychological Science (APS) – What Happened to Behaviorism
Berkeley Graduate Division: Graduate Student Instructor Teaching & Resource Center – Behaviorism
BMC Medical Education – Using Social Learning Theory to Explore the Process of Learning from Role Models in Clinical Settings
Psychology Today – Behaviorism
Psychology Today – Social Learning Theory
Stanford Encyclopedia of Philosophy – Behaviorism
Social Learning Theory – By Albert Bandura
Social Learning Theory in Social Work
Youtube Video from The Curious Classroom – Bandura and Social Learning Theory

Drive Theory

Ego psychology, object relations theory, self psychology.

Originally introduced by Sigmund Freud, psychodynamic theory has a storied history within social work. This theory is based on Freud’s belief that humans are intra-psychologically driven to seek gratification and that these impulses largely influence our everyday behavior. Psychodynamic theory has four major schools of thought: drive theory, ego psychology, object relations theory and self-psychology.

This psychodynamic theory is based on Freud’s belief that humans are biologically driven to seek gratification of their endogenous drive — and that these impulses largely influence our everyday behavior. Per Freud, these primary drives include sex, self-preservation, and aggression. Impositions on these drives may be external or internal via superego and ego; psychic structures introduced by Freud. Social workers who approach clients with theoretical orientation on drive may posit that a client’s actions are based on an innate suppression of, otherwise, socially unacceptable actions.

According to the American Psychological Association (APA), ego psychology is an approach that emphasizes the functions of the ego in controlling impulses, planning, and dealing with the external environment. Freud believed that the ego is weak in relation to one’s id. Ego psychology combines biological and psychological views of development by understanding the influences of socio cultural impacts on function.

Object-relations theory is a branch of psychodynamic thought that suggests relationships are more critical to personality development than individual drives and abilities. Accordingly, social workers may want to study the interactions between a client and the people who played a significant role in their life in early childhood.

Self psychology was introduced by Austrian psychoanalyst Heinz Kohut in the early 1970s and has since become one of social work’s most significant analytic theories. According to self psychology, humans have a distinct set of development needs and transferences: mirroring, idealizing, and alter ego. If a parent fails to meet those needs in childhood, an individual may wind up unable to regulate self-esteem — and therefore, may be overly dependent on others to provide those functions. In the realm of social work, this calls for a careful understanding of early occurrences and shortcomings.

Psychodynamic Related Resources

PsychCentral – Psychodynamic Therapy
Psychodynamic Theory – By Kathleen Holtz Deal
Psychology Today – Psychodynamic Therapy
SAMSHA/CSAT Treatment Improvement Protocols – Brief Interventions and Brief Therapies for Substance Abuse – Brief Psychodynamic Therapy
Psychosocial Development Theory

Transpersonal Theory

Growth. Change. Consistency. By adopting a developmental perspective, social workers can start uncovering the patterns of a person’s life. A large portion of developmental theories focus on childhood, since this is such a formative time.

Psychosocial Developmental Theory

Inspired by the earlier work of Sigmund Freud, German psychoanalyst Erik Erikson developed an eight-stage theory of identity and psychosocial development. According to Erikson, everyone must pass through eight stages of development throughout their life cycle: hope, will, purpose, competence, fidelity, love, care, and wisdom. As a social worker, you may find it useful to identify a client’s current stage to pinpoint what challenges they’re currently facing.

Transpersonal theory suggests the existence of stages beyond the adult ego. These stages contribute to creativity, wisdom, and altruism in healthy individuals—but can lead to psychosis in those lacking healthy ego development. In social work, transpersonal theory may be used to treat anxiety, depression, addiction and other mental health concerns. Typically spiritual approaches as used such as meditation, guided visualization, hypnotherapy and more.

Developmental Perspective Related Resources

A Lifespan Developmental Perspective on Psychosocial Development in Midlife – By Tara L. Kuther and Kaitlyn Burnell
Liberty University – Theories of Psychosocial Development
Midlife Eriksonian Psychosocial Development: Setting the Stage for Cognitive and Emotional Health in Late Life – By Johanna C. Malone, Sabrina R. Liu, George E. Vaillant, Dorene M. Rentz, and Robert J. Waldinger
Psychosocial Theory: Erikson – By Doug Davis and Alan Clifton
Psychology Today – Our Hierarchy of Needs
Psychology Today – Transpersonal Therapy
A Review of Transpersonal Theory and Its Application to the Practice of Psychotherapy – By Mark C. Kasprow, M.D. and Bryce W. Scotton, M.D.
Social Work and Social Development – Edited By James Midgley and Amy Conley

Social Exchange Theory

Social constructionism, symbolic interactionism.

Rational choice perspective is based on the idea that people calculate risks and benefits before making any decision, since all actions are fundamentally rational in character. Studying this theory can help social workers better understand client behavior. For instance, an action that seems objectively irrational to some, may make more sense upon closer examination of the individual’s context.

Social exchange theory dates back to 1958, when American sociologist George Homans published the paper “Social Behavior as Exchange.” According to Homans, any two-person relationship can be viewed in terms of cost-benefit analysis— what am I giving, and what am I getting in return? The APA defines social exchange theory as a concern of social interactions in exchanges where all participants seek to maximize their benefits. Within social work, professionals may utilize their theory to better understand interactions with their client and others around them — diving into the intrinsic rewards they may receive.

True. False. Good. Bad. Right. Wrong. In social constructionism, these are all relative concepts, entirely dependent on the person who is interpreting them. This concept abandons the idea that one’s mind represents a mirror of reality—rather, it suggests that each of us creates our own world from our individual perceptions and interactions with others in the community.

Symbolic interactionism positions communication as the central way in which people make sense of their social worlds. American psychologist Herbert Blumer introduced three premises of symbolic interactionism:

Humans interact with objects, institutions, and other individuals based on ascribed meanings.
These ascribed meanings are inspired by our interactions with others and society.
The meanings are interpreted by individuals in specific circumstances.

Imagine, for example, that your client professes a love for baking. Adopting a lens of symbolic interactionism, you may dig deeper into the ascribed meaning behind this act. Perhaps your client makes meringues because they used to help their mother do so in childhood — and for them, escaping to the kitchen is an act of comfort and safety.

Rational Choice Perspective Related Resources

Association for Behavior Analysis International (ABAI) – Behavior Analysis and Social Constructionism: Some Points of Contact and Departure by Bryan Roche and Dermot Barnes-Holmes
Cornell University ILR School – Social Exchange Theory of Emotions by Edward J. Lawler and Shane R. Thye
Iowa State University – Social Exchange Theory by Mark V. Redmond
Ontario Ministry of Children, Community and Social Services – Rational Choice and Routine Activities Theory
Rational Choice Theory: Advocacy and Critique – Edited by James S. Coleman and Thomas J. Fararo
What is Social Constructionism? – By Tom Andrews

Conflict theory explains how different power structures impact people’s lives. In this theory, life is characterized by conflict—whether that’s oppression, discrimination, power struggles, or structural inequality. In addressing these asymmetrical power relationships, social workers can strive to reduce tensions between different groups.

Practice Models Used in Social Work

Problem solving model.

Task Centered Practice
Solution Focused Therapy

Narrative Therapy

Cognitive-behavioral therapy, crisis intervention model.

Read on to discover how these practice models are used by social workers in a variety of settings.

Proposed by Helen Harris Perlman in her book Social Casework: A Problem-solving Process, the problem solving model. Ms. Perlman posited that “success could be achieved by partializing – or separating into manageable segments – a client’s intertwined problems and focusing on one specific issue the client and social worker agreed needed to be resolved at a given time”, according to The University of Chicago School of Social Service Administration . Utilizing this model, social workers are employed to address one concern of a client as to be resolved, at any given time. This allows for therapy for clients to be more manageable.

Task-Centered Practice

Beginning at the University of Chicago’s School of Social Service Administration, task-centered practice (TCP) is a four step process that trains social workers to work with clients in establishing specific and achievable goals based upon their concern for therapy. Through this model, social workers empower clients to drive their therapy by asking what they most want to work on to address their problems.

Solution-Focused Therapy

Solution-focused therapy was developed out of necessity, as a brief theory, in an inner city outpatient mental health setting bySteve de Shazer, Insoo Kim Berg and their colleagues. This approach focuses on finding solutions in the from the past, for the present — in hopes of achieving quicker problem resolution. Social workers may use this theory when focusing more on the present and future, asking questions like “What would you be doing this weekend that supports your therapy goals?”.

Narrative therapy can be an effective way of separating a client from their problems. By examining a person’s life story, this social work practice model externalizes struggles, allowing individuals to adopt a new perspective and see the bigger picture. From a distance, they may be able to reframe their situation—recognizing that their self-worth and purpose are separate from their problems. When told from a third-person perspective, a story of hardship may transform into a story of resilience.

Cognitive-behavioral therapy is one of the leading treatments for many mental health conditions. This social work practice model focuses on the relationship between thoughts, feelings, and behaviors—encouraging clients to identify patterns of irrational and self-destructive thoughts and behaviors that impact emotions.

Crisis intervention includes seven stages: assess safety and lethality, rapport building, problem identification, address feelings, generate alternatives, develop a plan of action, and follow up. This social work practice model is used when someone is experiencing an acute crisis — and is commonly used with clients who are expressing suicidal intent.

If you would like to become a social worker, but are not sure what degree options are available for you, explore our list of accredited masters in social worker online programs .

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Research Methods for Social Work: A Problem-Based Approach

Student resources, welcome to the sage edge site for research methods for social work , 1e.

Research Methods for Social Work: A Problem-Based Approach is a comprehensive introduction to methods instruction that engages students innovatively and interactively. Using a case study and problem-based learning (PBL) approach, authors Antoinette Y. Farmer and G. Lawrence Farmer utilize case examples to achieve a level of application that builds readers’ confidence in methodology and reinforces their understanding of research across all levels of social work practice. These real-case examples, along with critical thinking questions, research tips, and step-by-step problem-solving methods, will improve student mastery and help them see why research is relevant. With the guidance of this new and noteworthy textbook, readers will transform into both knowledgeable consumers of research and skilled practitioners who can effectively address the needs of their clients through research.

This site features an array of free resources you can access anytime, anywhere.

Acknowledgments

We gratefully acknowledge Antoinette Y. Farmer and G. Lawrence Farmer for writing an excellent text. Special thanks are also due to Kryss Shane for developing the resources on this site.

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Social Work Research: Concept, Scope

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An effort to create new knowledge or to upgrade existing knowledge either through observation, available facts, evidences or any other method, is research. We often make our mind or take decision, based on our observation about certain objects or phenomena. During whole process we remain unaware of our biases, we do not question them and we attribute our observations entirely to the object being observed. Though it is still possible to arrive at right decision on the basis of wrong reasons or vice versa. This whole thing questions the process of observation. Was the observation error-free? While observing are we aware of our limitations? Every method of observation has certain limitations. Important thing here is to take biases, the errors and limitations into consideration. Social work research is the application of research methods in the field of social work.

Table of Contents

Purpose of social work research is to produce new knowledge or to increase already available knowledge in the field of social work. Social work research gives new dimensions to social work techniques and methods and provides new ways to deal with problems. Social work research attempts to highlight insights about what intervention or treatment is actually helpful in practice and bring the best result. It also throw light on what hinder the attainment of desired goal. It also look for answers to problems faced by practitioners.

Relevance of Research in Social Work

Social work research tries to find answers to questions faced by practitioners and to make existing intervention more effective. The problems are not only professional but personal too. Overall aim is to make existing social work methods and techniques better and more effective.

In social work research, we study the problems from the point of view of professional social work. The designing of research problems, data collection and its interpretation will have to be attempted in a manner as would be useful to professional social work. The process should add new knowledge to social work theory and practice and also to enhance the outcome of professional social workers.

Limitation of Scientific Research Method in Social Work

Social work primarily deals with human behaviour, which is by and large complex and dynamic in nature. This means that different humans tend to behave differently under the same circumstances. One person can be happy in given circumstances and the second may be sad and at the same time others may remain indifferent. So it can easily be deduced that data collected for humans is subjective in nature and means very little for scientific research. Therefore one can not investigate human behaviour under guided conditions as in natural science. This creates many problems for researchers.

Social work will never realize the objective of research as completely as natural science does, but still social work does not completely diminish the importance of scientific research methods.

Social Work is a diverse profession and work almost at all level of social system. Possible broad research areas could be:-

Community health.
Community mental health.
Child welfare.
Women welfare.
Youth welfare.
Juvenile delinquency.
Crime and correction.
Aged welfare.
Poverty alleviation.
Management of Social Welfare Department and Organization.
Disaster Management.
Industrial Social Work.

These are the areas which are very frequently studied by Social workers. Researchers might focus on individuals, families, groups, community or broad social systems.

Facts, events, and evidence help acquire reliable knowledge about various aspects of human behaviour. To get that knowledge, the method of science is still the most commonly used method. Objectivity, replication, prediction and verifiability are the characteristics of scientific approach, which keeps the researchers at bay from their personal biases, beliefs, perceptions, values, attitudes and emotions. With all the limitations and characteristics, scientific research is the best method to arrive at generalization in the field of social work.

Cognitive behavioral therapy focuses on the relationship between thoughts, feelings, and behaviors. Social workers assist clients in identifying patterns of irrational and self-destructive thoughts and behaviors that influence emotions.

Crisis intervention model is used when someone is dealing with an acute crisis. The model includes seven stages: assess safety and lethality, rapport building, problem identification, address feelings, generate alternatives, develop an action plan, and follow up. This social work practice model is commonly used with clients who are expressing suicidal ideation.

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Social Work Research Methods: Qualitative and Quantitative Approaches With Research Navigator

ISBN-10 0205470114
ISBN-13 978-0205470112
Publisher Pearson
Publication date December 25, 2005
Language English
Dimensions 8.5 x 1.6 x 10.8 inches
Print length 672 pages
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Editorial Reviews

From the back cover.

This comprehensive text contains introductory and intermediate coverage of qualitative and quantitative social work research and evaluation applications for undergraduate and graduate social work students.

Integrates diversity and strengths/empowerment coverage throughout the text.
Includes a complete chapter on ethics in social work research (Chapter 5), which shows students how to integrate research and ethics content.
Provides comprehensive coverage on how to do a literary review, write a qualitative and quantitative paper/report, and cite Internet sources.
Includes case studies and vignettes throughout the text, which bring a real-world focus to the subject.
Includes “Statistical Package for the Social Sciences” in Appendix F, which illustrates data entry using SPSS with actual screen images to show students how to do tests of the null hypothesis, interpret significance tests, and understand measures of association.

What the reviewers are saying . . . This book thoroughly presents all the most important topics for an introductory research text. I really like the balanced presentation of quantitative and qualitative research, the boxed material, and the reasonable price. I think this is a very good book. –Thomas Barton, University of North Texas

This text does a superb job in covering topics important to social work research students. I can’t say enough positive things about how comprehensive I find this book–it is clearly a superior text. The coverage of ethics, literature review, and writing research reports places this book head and shoulders above the rest. –Janice Matthews Rasheed, Loyola University of Chicago

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Publisher ‏ : ‎ Pearson (December 25, 2005)
Language ‏ : ‎ English
Paperback ‏ : ‎ 672 pages
ISBN-10 ‏ : ‎ 0205470114
ISBN-13 ‏ : ‎ 978-0205470112
Item Weight ‏ : ‎ 3 pounds
Dimensions ‏ : ‎ 8.5 x 1.6 x 10.8 inches
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Briefing notes for researchers - public involvement in NHS, health and social care research

Published: 05 April 2021

Version: 1.0 - April 2021

Briefing note one: introduction

This guidance is for researchers new to public involvement in research and just starting to consider how best to involve members of the public in their work. It will also be of interest to researchers with experience of public involvement in research who are looking to update and refresh their knowledge and skills. And it will be helpful to others interested in public involvement in research, including involvement leads. This guidance explains the different ways that members of the public are involved in research. It will help you to plan, resource and support public involvement in research. You can find more involvement resources and guidance on Learning for Involvement .

Briefing note two: what is public involvement in research?

Definitions of involvement, engagement and participation.

Researchers and others use a variety of words to describe ways of interacting with the public. The terms involvement, engagement and participation are sometimes used interchangeably but the NIHR ascribes specific meanings to these terms as follows:

Involvement

NIHR defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. It is an active partnership between patients, carers and members of the public with researchers that influences and shapes research. When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services as well as people from specific communities and from organisations that represent people who use services. Also included are people with lived experience of one or more health conditions, whether they’re current patients or not. Here are examples of how members of the public might get involved in research:

as joint grant holders or co-applicants on a research project
identifying research priorities
as members of a project advisory or steering group
commenting on and developing patient information leaflets or other research materials
undertaking interviews with research participants
carrying out research as user and/or carer researchers

Public involvement as defined here is also sometimes referred to as Patient and Public Involvement (PPI). More information about approaches to public involvement can be found in section seven.

Where information and knowledge about research is provided and disseminated. Examples of engagement are:

science festivals open to the public with debates and discussions on research open days at a research centre where members of the public are invited to find out about research raising
awareness of research through media such as television programmes, newspapers and social media
dissemination to research participants, colleagues or members of the public on the findings of a study.

Find out more about engagement through the National Coordinating Centre for Public Engagement.

Participation

Where people take part in a research study. Examples of participation are:
people being recruited to a clinical trial or other research study(eg to test the efficacy of a new treatment)
completing a questionnaire or participating in a focus group as part of a research study

Find out more about how members of the public participate in NIHR research on Be Part of Research. These different activities – involvement, engagement and participation – are often linked and, although they are distinct, they can complement each other.

Briefing note three: why involve members of the public in research?

Public involvement can improve the quality and relevance of research, as well as serving the broader democratic principles of citizenship, accountability and transparency. For these reasons, public involvement is increasingly an expectation if not a requirement of research funders. Research teams do not always clearly articulate their rationale for public involvement. A clear rationale helps researchers be more specific about who they want to involve, and in what ways.

Democratic principles

People who are affected by research have a right to have a say in it. Public involvement in research is an intrinsic part of citizenship, public accountability and transparency. It can also help empower people who use health and social care services, by providing the opportunity to influence research that is relevant to them.

Providing a different perspective

Members of the public might have personal knowledge and experience relevant to your research topic or be able to provide a more general societal perspective. They might have lived experience of one or more health conditions or of using services. Members of the public will also bring their experiences of being part of specific communities or groups.

Improving the quality of the research

Involving members of the public helps ensure that research focuses on outcomes that are important to the public. It is also a good way of tailoring your research to the needs of specific communities. For example, if you are seeking research participants from a particular community, involving members of that community in shaping the study design can help improve recruitment and retention of participants by ensuring that your ways of communicating and your research methods are sensitive to the needs, customs and circumstances of the community.

Making the research more relevant

Public involvement can make research more relevant for example through:

identifying a wider set of research topics than would have been generated just by academics and health or social care professionals suggesting ideas for new research
ensuring research is focused on what matters to people - for example by prioritising symptoms that are of importance to patients with a particular condition
helping to reshape and clarify the research

Interests of research funders and research organisations

Several funding bodies, as well as research ethics committees, ask grant applicants about their plans for public involvement with an expectation that if they are not involving members of the public in the research then they need to have clear reasons for this and be able to explain them. For example, NIHR has a standard application form used by all research programmes. One of the sections on the form asks applicants to describe how they have involved the public in the design and planning of their study as well as their plans for further involvement throughout the research, including plans for evaluating impact. Applicants are also asked to provide details of the budget they have allocated for public involvement in their research. Responses to these questions will be considered by the reviewers, research panels and boards (which increasingly include members of the public) and will influence funding decisions.

The Research Ethics Service will ask about the plans for public involvement in your research if you apply for ethical approval, and it will be part of their assessment process. They expect the involvement of the public in research, as it can help ensure that research planned is ethical, relevant and acceptable from a public perspective.

Briefing note four: why members of the public get involved in research

Members of the public get involved in research for a variety of personal and social reasons. For some, these are linked to personal experiences of health or social care services and a desire to bring about change in the quality of care or to improve treatments either for themselves or for others with a similar condition. For others it might be a way to have a ‘voice’ and influence the processes that affect people’s lives. Some people have had difficult experiences and appreciate being able to do something positive with that experience. Others have had very good experiences, and see their involvement as an opportunity to ‘give something back’. Other people get involved to ensure the voice of their community/communities are represented in research. Well planned and resourced involvement in research can also be valuable to those involved by increasing their confidence and knowledge and helping them to develop new skills. healthtalk.org has a series of interesting videos where various members of the public talk about their reasons for getting involved in research, including helping others and medical science and also for personal benefits .

Briefing note five: how to involve members of the public in research

Uk standards for public involvement.

A good place to start when planning how to involve members of the public in research is the UK Standards for Public Involvement . Developed over three years by a UK-wide partnership , the Standards are a description of what good public involvement looks like. They encourage approaches and behaviours that are the hallmark of good public involvement such as flexibility, sharing and learning, and mutual respect . The Standards are for everyone doing health or social care research, and provide guidance and reassurance for practitioners working towards achieving their own best practice. The six Standards are:

inclusive opportunities – offer public involvement opportunities that are accessible and that reach people and groups according to research needs
working together – work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships
support and learning – offer and promote support and learning opportunities that build confidence and skills for public involvement in research
governance – involve the public in research management, regulation, leadership and decision making.
communication – use plain language for well-timed and relevant communications, as part of involvement plans and activities
impact – Seek improvement by identifying and sharing the difference that public involvement makes to research

Below we provide more information on each Standard. The Standards were tested by over 40 individuals, groups and organisations during a year-long pilot programme, and you can find out more about these ‘test bed’ projects and how they went about implementing the UK Standards for Public Involvement in the Implementation Stories report .

Inclusive opportunities

Offer public involvement opportunities that are accessible and that reach people and groups according to research needs. Research is to be informed by a diversity of public experience and insight, so that it leads to treatments and services which reflect these needs. The questions below may help you reflect on and decide if you meet the Standard:

are people affected by and interested in the research involved from the earliest stages?
have barriers to involvement, such as payment for time or accessible locations for meetings been identified and addressed?
how is information about opportunities shared, and does it appeal to different communities?
are there fair and transparent processes for involving the public in research, and do they reflect equality and diversity duties?
is there choice and flexibility in opportunities offered to the public?

The NIHR is committed to actively and openly supporting and promoting equality, diversity and inclusion, and this also applies to how we do public involvement . As such, this Standard is crucial for NIHR, and the research we fund.

The NIHR’s Being Inclusive in Public Involvement in Health Research guidance provides key tips for researchers and practitioners:

check your power - try to understand power relationships within your context and your role, and how to promote inclusion
value the people you work with - people will bring different perspectives and opinions
use language carefully - avoid jargon, write in plain English and be considerate
consider inclusive locations - decide together on the best places for meetings
listen and seek agreement
get from A to B, perhaps via Z - be flexible
collaborate - work with community organisations
invest in the workplace
commit to a relationship
evidence, evaluate, share and reflect
act small, think big - support people, researchers and members of the public to develop confidence, learning and skills

Find out more about EDI and accessibility:

Tips for researchers involving unpaid carers in health and care research
Being Inclusive in Public Involvement in Health Research guidance
Different experiences: a framework for considering who might be involved in research guidance
government guidelines on writing about ethnicity
the East Midlands Academic Health Science Network PPI webpages have a number of top tips leaflets for engaging with various communities
NIHR Plain English Summaries guidance

Working together

Work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships. Public involvement in research is better when people work together towards a common purpose, and different perspectives are respected. The questions below may help you reflect on and decide if you meet the Standard:

has the purpose of public involvement been jointly defined and recorded?
have the practical requirements and arrangements for working together been addressed?
have all the potential different ways of working together been explored, and have these plans and activities been developed together?
is there a shared understanding of roles, responsibilities and expectations of public involvement?
have individuals’ influence, ideas and contributions been recognised and addressed?

Support and learning

We offer and promote support and learning that builds confidence and skills for public involvement in research. We seek to remove practical and social barriers that stop members of the public and research professionals from making the most of public involvement in research. The questions below may help you reflect on and decide if you meet the Standard:

is there a range of support to address identified needs?
have specific resources been designated to support learning and development opportunities for both the public, researchers, and staff?
do the public know where to go for information and support about public involvement?
is there a culture of learning- by- doing, building on and sharing that learning for researchers, staff and the public?

Different types of training might be:

sharing knowledge and experiences with colleagues and peers ‘on the job’ training
attending training sessions or courses

Support might take the form of:

support from other team members
a mentor with similar experience
team meetings or one-to-one meetings with line managers
IT support for remote working
informal or formal mechanisms of peer support

Find out more about guidance, training and support on Learning for Involvement .

Involve the public in research management, regulation, leadership and decision making. Public involvement in research governance can help research be more transparent and gain public trust. The questions below may help you reflect on and decide if you meet the Standard:

are public voices heard, valued and respected in decision making?
are public involvement plans in place that are regularly monitored, reviewed and reported on?
is there visible and accountable responsibility for public involvement throughout the organisation?
are realistic resources (including money, staff, time) allocated for public involvement?
is the privacy of personal information protected by collecting and using it in a suitable way?

Communications

Use plain language for well-timed and relevant communications, as part of involvement plans and activities. Communicate with a wider audience about public involvement and research, using a broad range of approaches that are accessible and appealing. The questions below may help you reflect on and decide if you meet the Standard:

has a communications plan been developed for involvement activities?
are the needs of different people being met through inclusive and flexible communication methods?
are processes in place to offer, gather, act on and share feedback with the public?
are you sharing your public involvement learning and achievements, good and bad?

Be clear with the people you want to involve. It is important that both you, as a researcher, and the people you involve have a shared and clear understanding of what they are being invited to do. Explain why you are asking people to get involved, and agree the aims of the research. It can be helpful to develop a role description and/or terms of reference so people know what is expected of them, and what they can expect from you.

Seek improvement by identifying and sharing the difference that public involvement makes to research. Understand the changes, benefits and learning gained from the insights and experiences of patients, carers and the public. The questions below may help you reflect on and decide if you meet the Standard:

are the public involved in deciding what the assessment of impact should focus on, and the approach to take?
is it clear what information you will collect to help assess impact, including who has been involved and how?
are there processes in place to help reflect on public involvement?
is there a commitment to learn from the public involvement experience and, where possible, to act on this learning?

Resource public involvement in research

To achieve good quality public involvement, as set out by the UK Public Involvement Standards, it is crucial to consider how to resource public involvement both in terms of budget and the additional time required to involve the public in your research. Some research funders, such as NIHR, will actively encourage and expect public involvement to be adequately costed in research proposals. It can be challenging to obtain funding for public involvement later if it has not been built into your research grant application. Costs will differ depending on how you are involving people in your research and who you are involving. You can find in-depth information on budgeting for involvement in the NIHR’s Payment Guidance for researchers and professionals .

Do I need ethical approval for public involvement?

Ethical approval is not needed where people are involved in planning or advising on research, for example as a co-applicant on a research grant, a member of an advisory group or in developing a questionnaire. For more information, the following resources are recommended: Qualitative research and patient and public involvement in health and social care research: What are the key differences?

Clarify your organisational responsibilities

It is important that you liaise well in advance with the relevant departments within your organisation such as finance and human resources (HR). Explain how you plan to involve members of the public in your research. This will ensure that you are aware and informed of local arrangements for involving members of the public and any issues that finance or HR may raise about the proposed arrangements. If there are any concerns raised by these departments you will have time to address them early on. Examples of issues you might need to consider are:

payment and expenses policies
methods for paying people (including tax and national insurance deductions)
confidentiality agreements –(where these apply, all members of the research group should be asked to sign , not just the members of the public
health and safety
honorary contracts
Disclosure and Barring Service (DBS) checks

We recommend that you:

have a lead for public involvement in your team so there is a point of contact for all involved
talk to others within your organisation who have involved people in their research
make sure that people involved know that they can stop being involved at any time
consider the emotional support you might need to offer people, if the research is sensitive or they find some of the information distressing, and where to access this support
if asking your own patients or their carers to work with you on a study consider if this is appropriate and how this might affect your relationship with them
where appropriate, discuss in advance what will happen should people become ill for periods of the research discuss in advance with the people you have involved whether and in what ways they might want to stay involved after the project

Briefing note six: who should I involve and how do I find people to involve?

Who should i involve.

In deciding who best to involve it is important to think about the knowledge and perspectives that you are looking for from members of the public, and what support you are able to give to people who you plan to involve. You might also want to consider involving carers in your research, as they provide a unique and valuable perspective. We have produced some tips to help you involve unpaid carers in your research project . Key points to consider when deciding who might be involved in research, are set out in the guidance note: Different Experiences: A framework for considering who might be involved in research guidance and include the following:

be clear about the purpose of involving people in research and what experiences and knowledge they can provide
include a diversity of relevant views and perspectives
take a common sense approach to who you involve
people can wear several hats, and their contributions may be broader because of this range of experiences
the type of lived experience required will vary depending on the focus of the research

For most studies it is not appropriate for people involved in the research also to be participants in the research as that can compromise both the researcher and the person involved. The possible exceptions to this may include some participatory/action research studies where the participants of the research may also be acting as co-researchers, influencing the shape of the study as it progresses.

Involve more than one person

Involving more than one person allows you to include different people at different stages of the research, and provides them more choices in how they are involved. It will also help you to:

increase the breadth of experience and skills brought to the project
provide an opportunity for those involved to support and encourage each other
make the overall public presence more resilient to individual absences resulting from illness or clashing commitments Include a diversity of relevant views and perspectives

Consider the broad and different views and experiences you will need to include in your research. Try to ensure that you have a variety of perspectives so you get different viewpoints and allow time for those who have the skills you require for the project to network with others. You can read the Being Inclusive in Public Involvement in Health Research guidance for further information, and refer to the ‘inclusive opportunities’ Standard for public involvement .

How do I find people to involve?

Once you have considered who you would like to involve, you then need to think about how to make contact with them. Speak with colleagues and members of the public and ask for their views on how to find the people you want to involve. Allow time to make contact with organisations and individuals as finding people will nearly always take longer than you think. Rather than inviting people in to talk to you, go out and engage with communities or groups where they already meet, whether that be in physical spaces or online forums. Others have contacted people by:

for specific communities, getting in touch with relevant community groups, community and faith leaders, or other individuals who can help you engage with specific groups of people

asking community members or patients about people who might be interested in getting involved
advertising in GP surgeries, outpatient departments, local newspapers and on the radio
talking to local or national patient support groups and voluntary organisations
searching online for relevant organisations
using social media such as Facebook or Twitter
talking to other health and social care professionals such as community development workers, social workers, health visitors, GP practice managers
contacting the Patient Advice and Liaison Service (PALS) Officer based at your local NHS Trust
putting details of the opportunity for people to get involved on the People in Research website so interested members of the public can make contact

Spend time developing networks and building relationships. This might involve visiting organisations to hear about what they do and talking to them about your research. Many researchers develop long term relationships with organisations and individuals who continue for many years past the involvement in the first research project. Be aware that some people or organisations might choose not to get involved in your work. This might be for a variety of reasons but it might be because their aims do not match yours, they do not have the time, or because the practical costs of either getting involved or finding somebody to get involved in your work is too great. Some organisations charge when they are asked to find people to get involved in research activities. Find out more about how to find people to involve:

watch this Youtube video from Caroline Barker, from the University Hospital Southampton NHS Foundation Trust, on Reaching new public members in a virtual world
People in Research is a national platform to help members of the public find opportunities to get involved in research and for research organisations and researchers to advertise involvement opportunities
Vocal creates opportunities for people to find out about, and have a voice in, health research in Greater Manchester
Patient has a comprehensive list of national and local support groups and organisations

Briefing note seven: approaches to public involvement in research

We use the terms consultation, collaboration, co-production and user-controlled describe different broad approaches to involving people in research, associated with progressively increasing levels of power and influence for members of the public. In practice, research projects can include a combination of these four and boundaries between them are not clear cut. Moreover, each approach encompasses a range of specific methods for involving people. For example, you might work with one or two service users or carers as collaborators throughout a research project, as well as consulting with a wider group of service users on a specific aspect of the study, while some members of the public might lead on one stage of the research. How you involve people will depend on the nature of your research, as well as the different activities people decide they would like to get involved in. If it is the first time that you have involved people in research consider where public involvement will be most effective in your research. This might be in a relatively modest way at first, perhaps in just one activity or at one stage of the project. Build on the skills and experience you develop in future projects

Consultation

Consultation is when you ask members of the public for their views and use these views to inform your decision making. Consultation can be about any aspect of the research process – from identifying topics for research through to thinking about the implications of research findings. You might, for example, hold one-off meetings to ask people’s views on the importance of a study and areas that it is important to measure within the study. Research funders may consult members of the public by asking for their views on research grant applications. If this is the first time you have involved people in your research, it can be a good starting point. It can also be a way of getting the views of a larger group of people. However, think carefully about what you are asking and what you will do with the information. Be clear about these aims with the people you involve. You might find that people are frustrated at being asked for their views without a commitment from you that you will act on them. There is a danger of ‘consultation fatigue’ for individuals and organisations who have been consulted before and think that their views have been ignored. If you decide to consult people on your research we recommend that you:

give them enough time to respond
feedback on the actions you have taken as a result of the consultation
ask if they would like to hear about the findings of the research

Benefits of consultation:

it enables you to find out people’s views
it can be useful when exploring sensitive and difficult issues
you can get a wide range of views
you can involve people in discussion and debate

Challenges of consultation:

you might not get the broad views you hope for
people might have previous bad experiences of consultation where their views were not listened to
as the consultation is framed by your own concerns and questions, you might not get the level of insight from consultees that could emerge in
a more two-way process
you might require an experienced facilitator

Working more closely with members of the public, returning to ask them for further information, and developing an ongoing relationship with them, will take you towards collaboration.

Collaboration

Collaboration involves an ongoing partnership between you and the members of the public you are working with, where decisions about the research are shared. For example, members of the public might collaborate with the researchers on developing the research grant application, be members of the study advisory group and collaborate with researchers to disseminate the results of a research project. This is a broad approach that can be used in a wide range of different research activities and at many different stages of the research project. Collaboration requires commitment, openness and flexibility and it is important to plan and prepare adequately (see briefing note five on planning and preparation). Benefits of collaboration:

helps to ensure research remains focused and relevant
skills and perspectives of the public and the researchers can complement one another
helps to ensure the research is ethical
can help with recruitment and informed consent

Challenges to collaboration:

time-consuming and involves additional cost
researchers and the public may require training or support
researchers need to be flexible and willing to share the control of the research

Co-production

Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge. The assumption is that those for whom the research is most relevant are best placed to design and deliver it in partnership with the professionals, and have skills, knowledge and experience of equal importance. There is an overlap with the collaboration approach but what defines co-production is the values and principles that underpin it, rather than any specific tools or techniques. Indeed, there is no single formula or method for co-production and such an approach would be counter to the innovation and flexibility that is implicit in co-produced research. Rather, co-production requires that relationships are valued and nurtured, that efforts are made to redress power differentials, and that people are supported and enabled to realise their potential in carrying out their roles and responsibilities in the project. Co-producing research can include partnerships between academia and organisations representing the public as well as individual public members working with organisations, for example universities, which undertake research. The NIHR’s Guidance on co-producing a research project describes key principles and features of co-production. These are summarised below: Key principles:

sharing of power – the research is jointly owned and people work together to achieve a joint understanding.
including all perspectives and skills – making sure the research team includes all those who can make a contribution.
respecting and valuing the knowledge of all those working together on the research – everyone is of equal importance.
reciprocity – everybody benefits from working together.
building and maintaining relationships – an emphasis on relationships is key to sharing power

Key features:

establishing ground rules
continuing dialogue
joint ownership of key decisions
a commitment to relationship building
opportunities for personal growth and development
flexibility
continuous reflection
valuing and evaluating the impact of co-producing research

The NIHR’s Guidance on co-producing a research project also presents some challenges that need to be addressed to enable more opportunities for co-producing research. These challenges touch on the topics of power (and power sharing), flexibility in research approaches and practices, the need for more guidance on co-production, and how to assess and evaluate co-produced research. Find out more about co-production:

NIHR Guidance on co-producing a research project
NIHR Co-Production in Action (Number One)
NIHR Co-Production in Action (Number Two)
NIHR Co-Production in Action (Number Three)
BMJ: ‘Co-production of knowledge: the future’ Collection of articles (2021)
the NIHR Research Design Service South East have produced a podcast series on co-production
the Co-Production Collective is a community of patients, carers, researchers, practitioners, students and anyone else who is interested in co-production

User controlled research

User controlled research is research that is actively controlled, directed and managed by service users and their service user organisations. Service users decide on the issues and questions to be looked at, as well as the way the research is designed, planned, written up and disseminated. The service users will run the research advisory or steering group and may also decide to carry out the research. Some service users make no distinction between the terms user controlled and user led, others feel that user led has a different, vaguer meaning. They see user led research as research which is meant to be led and shaped by service users but is not necessarily controlled or undertaken by them. Control in user led research in this case will rest with some other group of non-service users who also have an interest in the research, such as the commissioners of the research, the researchers or people who provide services. Examples of user-controlled research in action have highlighted several key reasons why user-controlled research is important for service users:

a commitment to changing or improving the lives of their community of service users
frustration with traditional research and services which exclude them
frustration with mainstream research in failing to capture their needs or to research things they feel are important

As a researcher, you might get involved in user controlled research in several ways such as:

training or supporting a group of service users who are undertaking their own research
supporting user controlled research in a specific part of the research
a user controlled organisation might commission you to carry out research under their direction

Organising and hosting meetings

Regardless of the approach you take, involving members of the public is likely to entail organising and hosting meetings. How you do this can make a huge difference to how people feel about the research and how much they are able and want to get involved in your work. Holding a meeting is only one of the ways to involve people and you may decide that this is not the best approach for your research. If you do choose meetings, you need to consider whether face-to-face, online, or a combination of the two work best for your research project, and your public contributors.

Planning for meetings: face-to-face

explore opportunities for meeting people in their own environment, such as by attending a regular meeting of an organisation or group consider venues that are on neutral ground – venues such as hospitals or local authority departments might be associated with difficult experiences
those who are working, have young children or who are carers might need to meet outside office hours
make sure that there is parking and public transport nearby
it is often better to plan for a mid-morning or early afternoon start to the meeting – this makes it easier for people if they have to travel some distance to the meeting or if they need additional time in the mornings because of their disability or health condition
in some situations, you might need to offer overnight accommodation, in which case check if they have any special requirements for an overnight stay
make sure meeting places, hotels and facilities are accessible to all those attending, for example if you are inviting a wheelchair user to join your committee, meet in an accessible meeting room with parking nearby and fully accessible facilities
where possible, visit the venue in person in advance of the meeting, and ask to be shown around to check its suitability and access to all rooms, dining area, disabled toilets and the stage speaker area (if required)
ask people if they have any special dietary requirements and let them know what refreshments you will be providing
be mindful of practical matters such as microphones and hearing loops for people with hearing impairments or large print for people with visual impairments
think about whether you will need interpreters for people from different ethnic groups or for sign language
provide clear information about the meeting, timings and directions for getting to the venue well in advance and in a relevant format
ask people if they require information posted to them or if they would like to receive it by email
plan and prepare a budget for your meeting
consider developing terms of reference and/or ground rules for the meeting so that those attending know why the meeting is being held and the responsibilities of those attending

Planning for meetings: online

The NIHR School for Primary Care Research (SPCR) has developed useful guidance on how to hold a PPI meeting using virtual tools , which details these key tips and tricks:

keep it simple - use easy software and tools
send documents in advance
don’t chair and make minutes simultaneously
choose appropriate software - SPCR provide specific tips for Microsoft Teams and Zoom
promote the opportunity widely - virtual meetings give you the opportunity to involve people not usually involved in research
adjust the agenda accordingly - take into consideration more frequent breaks
have a backup plan if technology fails
provide support before and during the meeting

There is a wide range of guidance on good practice for online meetings for involvement. Here are some of the ones we think might be most useful:

here is an overview of the best video conferencing apps for accessibility
National Coordinating Centre for Public Engagement Online Engagement: a guide for creating and running virtual meetings and events
a blog by University College London on Engagement in a time of social distancing , which also includes further resources and reading
Engaging at a distance guidance from Being Human, which has a useful online event checklist
there are particular considerations to keep in mind when hosting online meetings which will be accessed by disabled people. Find out more about how to make your virtual meetings and events accessible to the disability community and how to run accessible online meetings for disabled people working and studying from home.

Conducting the meetings (face-to-face and online)

brief the Chair and other committee members to ensure that the members of the public are welcomed and included during the meeting. You can find out more about chairing a meeting by reading the TwoCan Associates guidance for chairs
offer a pre-meeting or telephone discussion for members of the public to discuss the agenda and papers
for face-to-face meetings, provide name badges in a large clear text font
ask people to introduce themselves at the beginning of the meeting
agree ground rules for how you will conduct a meeting so everybody has an equal opportunity to contribute
members including members of the public agree to these rules of mutual respect
make sure that everybody has an equal voice on the group
encourage the use of clear language, explain jargon and acronyms
ask the Chair to regularly check that people understand the language used and the content of the meeting
plan for frequent breaks as people might need to take medication or find sitting for long periods difficult
for face-to-face meetings, see if it is possible to have a spare room to allocate as a quiet room for those who might need to take some time out of the meeting
consider different ways of conducting meetings, such as time in small group sessions (breakout rooms online) as well meetings in a larger
group to allow people the opportunity to contribute in different ways
create a mentor or buddy system to support the members of the public you are involving on an ongoing basis

After the meeting (face-to-face and online)

share a write up of the event, including any recommendations or outcomes
provide feedback on any recommendations or outcomes
allow sufficient time between meetings for people to consult with their peers or their organisations if they wish to do so
ask for feedback from members of the public involved in the meeting and if they have any suggestions for improvement for future meetings

Briefing note eight: ways that people can be involved in the different stages of the research cycle

Members of the public are getting involved in a whole range of research activities. These include helping to develop the research question, applying for funding and ethical approval, sitting on advisory groups, carrying out the research and disseminating the research findings. This section considers the different ways members of the public can get involved in the stages of the research cycle. When reading through this section, keep in mind the six UK Standards for Public Involvement : inclusive opportunities; working together; support and learning; governance; communications; impact.

Identifying and prioritising research

Involving the public in helping to identify and prioritise research questions is a powerful way of ensuring that your research priorities are aligned with those of people who have a personal stake in the subject, for example if they have the condition you are researching or use relevant services. Depending on the type of funding call you are applying for, topics might have already been decided by the research funder or commissioner. Members of the public might have been involved in the identification and prioritisation of the topics by the research funding organisation. People with lived experience - and the organisations that represent - researchers and health and care practitioners will all have distinct, though often overlapping research priorities. By working together you can develop a shared agenda. An active partnership will enable you to learn from each other and agree on the research questions together, and the final topic will be a shared decision between the group. Consider recording how the research questions were developed and the different influences on the questions at the beginning of the project. Researchers and research organisations use a range of different ways to work with the public to identify and prioritise research. These include:

discussions with existing reference groups and networks
inviting people to an event or holding a workshop or focus group
attending meetings held by service user groups
peer group interviews
surveys and interviews
asking support organisations about the feedback they get from people who use services
using an independent facilitator (this reduces the risk of researchers influencing the agenda too much)

Sometimes it is difficult for people who are unfamiliar with research to identify research questions. It may help to first discuss problems that people experience living with their condition/s, or using treatments or services, before discussing how these might be turned into research questions.

Find out if others have worked with members of the public to identify research topics

In several areas of research including cancer, arthritis and mental health the research topics and priorities of people with these conditions have been explored and published. Find out if research has been carried out to identify the topics most relevant to patients or service users in your area of work to enable you to identify relevant research topics. The James Lind Alliance , funded by the NIHR, facilitates Priority Setting Partnerships. These partnerships bring patients, carers and health and care practitioners together to identify and prioritise the care and treatment uncertainties which they agree are the most important for research. It’s not too late to involve people if you have already identified a research topic – you can still involve the public by asking them if the topic is relevant to them. Most researchers or research organisations have a range of topics or areas that they would like to research. Members of the public can work with individual researchers, research teams or organisations to decide which topics to focus on first. Listen, respond and talk through with them how their ideas can be included in your research questions.

Commissioning research

Many funding organisations now involve members of the public in commissioning research. For example the NIHR recruits and supports patients, carers and members of the public to give feedback on health and social care research funding applications . This gives a broader perspective to the review process, by considering the issues that are important from a public and patient perspective. Involvement in commissioning can be done in a variety of ways, including:

involving members of the public in reviewing research proposals
having members of the public on research commissioning panels or boards
involvement in the monitoring process of research, once funded
user controlled organisations commissioning research

Designing and managing research

Involving members of the public in the design of research helps to ensure that the research is relevant to the needs of people and that the research questions and outcomes are clear. It strengthens the ethical basis of the research, and can help improve the recruitment and retention of volunteer participants in the study. Public involvement in the design stage of the research can:

demonstrate to funders and commissioners that the topic is important and relevant to the end users of research and that they have been
involved in the design of the research
identify aspects of the research that raise ethical considerations and provide a broader set of perspectives on solutions
suggest ways that people can be meaningfully involved in the various stages of the research
suggest ways to ensure that diversity and inclusion are addressed in the research, for example in ensuring that volunteers can be recruited
from certain ethnic communities
ensure that your recruitment process is practical and feasible
help you to develop a budget for public involvement in your research and ensure that the time and the support needed for public involvement
is built in to the research from the beginning
help develop written information in user friendly and plain language, which is appropriately targeted at specific communities

Be clear with the people you are involving about the fact that the funding process can be lengthy and that the research may not get funded.

Funding to support public involvement in your research grant application

It can be challenging to obtain funding to support public involvement prior to your grant application being successful. Speak to your organisation or university to see if they have any funding for public involvement. It’s not too late to involve people if you have already developed your research grant application. You can still involve members of the public by:

asking people to review your proposal and give written comments on any potential difficulties in your design
taking your proposal to a local public involvement group or panel and ask for their views – your university or NHS Trust might already have a
group or panel of people who are willing to do this
thinking about how best to involve people at other stages of the research if your application is successful

Managing research

One of the main ways that members of the public get involved in managing research is through membership of a study steering group or management committee. Increasingly members of the public are taking a more active role in research as collaborators or in some cases as the principal investigators in studies. In these circumstances they will often be employed as a member of the research team. Involving members of the public in managing research can help to ensure that:

a public and societal perspective is maintained throughout an individual project or a programme of work
public involvement in the project is properly budgeted and funded
effective support is developed for members of the public involved in the study
advice is available on improving the recruitment of participants to the study
there is involvement in the selection process of staff and researchers for the study – particularly helpful if they are going to be working with research participants

Find out more about public involvement in managing your research on the NIHR website .

Undertaking the research

Members of the public can get involved in a variety of roles in carrying out the research such as:

gathering and reviewing documentary evidence
undertaking library-based research
carrying out interviews
running focus groups
analysing and interpreting the results of research

Gathering and reviewing documentary evidence and undertaking library-based research

Members of the public can help look at different types of evidence and interpret the literature from a public perspective.

Interviewing and running focus groups

If you are going to involve members of the public as peer interviewers (people who have direct experience of the topic being researched and who carry out interviews with other members of the public) or in running focus groups, we suggest you consider:

who the ‘peers’ are for your research project, for example their gender, age, ethnicity or experience of using a particular service
training and support required to carry out the role.

Analysing and interpreting the results of research

Involving members of the public in analysing and interpreting research findings can:

help to identify themes that researchers might miss
help check the validity of the conclusions from a public perspective
highlight findings that are more relevant to the public

You might involve the members of the public who have been working with you on the research project to analyse and interpret the research findings. Alternatively you could hold a small event to find out the views of a wider audience.

Disseminating research

Members of the public involved in your research will want to ensure that the findings are widely disseminated so they can influence and change practice for the better. It has been found that involving people at the dissemination stage is more successful if they have also been involved at the earlier stages of the research as they then benefit from a sense of ownership of the research and an understanding of the context and background. This means they will be more likely to disseminate the results to their networks, to help summarise the research findings in clear user-friendly language and ensure that the information is accessible to a public audience.

To encourage and support public involvement in dissemination:

develop progress reports or newsletters to keep people informed throughout the project, reporting both negative and positive results
feedback results to all those you consulted and collaborated with as well as participants
work with members of the public to develop your dissemination plans – they will often have access to groups and forums that researchers are not aware of
involve people in presenting at conferences, speaking to patients, support groups and service providers
ask members of the public involved in your research to be co-authors in journal and newsletter articles
acknowledge the contribution members of the public made to the research when writing journal articles and reports

Remember to include funding for public involvement in disseminating the findings in your grant application, and consider if you will need to allocate funding for developing and printing summaries and for postage. It’s not too late – if you have reached the stage of disseminating your research, there are still options open to you for involving people:

discuss your research findings with members of the public and listen to their views
ask for their ideas on how best to report your findings to others through networks, newsletters and different media and formats
involve people in working with you to ensure that the information is clear and easy to understand for different audiences
reflect on and plan how you will involve people earlier in your next project

Implementing research

Public involvement in your research can influence, support and add strength to the way your research is taken into practice. Public involvement in research often provides a route to effecting change and improvement in aspects of health and care practice that are of particular concern to people. Members of the public involved in research are often passionate to ensure that action happens as a result of the research and might be able to establish influential relationships with key agencies and policy makers.

Evaluating impact

From the beginning of your project think how you are going to monitor and evaluate public involvement and its impact throughout the project. Working with the people you involve, document and write up an evaluation of the public involvement in your research recording short and long term impacts. This will help you for future projects and provide valuable knowledge for other researchers looking to involve members of the public in their work. Help to build the evidence base and let others know about what worked well and what didn’t and the impact of public involvement in your research by:

including the information in your research reports
publishing information on the impact in journal articles

Find out more about reporting evaluating impact of public involvement in your study:

PiiAF – The Public Involvement Impact Assessment Framework and Guidance (Popay, Collins et al 2013)
What does it mean to involve consumers successfully in NHS research? A consensus study (Telford et al 2004)
PIRICOM study: a systematic review (Brett et al 2010)
Service user involvement in nursing, midwifery and health visiting research: A review of evidence and practice (Smith et al 2008)

Briefing note nine: what to do when things go wrong

In this guidance we have provided information to help you think through how best to involve people in your research. However, there will occasionally be times when things go wrong. Problems can often be sorted out by informal discussions but if you think that things are going wrong it is best to act quickly. If left unresolved, problems can get worse and affect a growing number of members of a team or organisation. Depending on what the issue is we suggest you consider some of the following:

acknowledge that there is a problem
listen to any concerns and openly discuss them with those involved along with any concerns that you might have
allow space and time for all involved to reflect - public involvement in research is a learning process
refer back to any relevant documents that you have developed such as ground rules for meetings, complaints policy, confidentiality agreements
set a timescale for agreed change to happen
let people know about any actions/changes/decisions
ensure support is available if necessary
consider using a skilled external facilitator to help with the reflection process

If you are unable to resolve issues using some of the above strategies or if either you or the member of the public feel a more independent review of the situation is required then a more formal approach should be considered. It is helpful to outline in your planning and preparation the procedure for complaints and resolving differences so that the information is clearly available from the beginning. More formal procedures might be:

Patient Advice and Liaison Service (PALS) Officers
university complaints procedures
local authority complaints procedures

If you are working with people representing a non-statutory organisation, that organisation might have its own processes.

Briefing note ten: where to go for further information

Nihr information.

Learning for Involvement allows you access training and guidance on public involvement People in Research reports live opportunities for public involvement in NHS, public health and social care research, and allows you to submit your own Read the NIHR Payment Guidance for Researchers and Professionals NIHR Research Support Service (RSS) - The RSS provides free and confidential support for researchers to apply for funding and develop and deliver clinical and applied health and care research. Access to support, advice and expertise is available for all researchers in England working across the remit of the NIHR . NIHR Clinical Research Network (CRN) - The CRN supports patients, the public and health and care organisations across England to participate in high-quality research, thereby advancing knowledge and improving care. The CRN comprises 15 Local Clinical Research Networks (LCRN) and 30 Specialties which coordinate and support the delivery of high-quality research both by geography and therapy area. National leadership and coordination is provided through the Research Delivery Network Coordinating Centre. Contact your LCRN .

How to cite this guidance

NIHR, Briefing notes for researchers, April 2021, [URL], (Accessed on: [DATE])

Acknowledgements

This resource was reviewed by the NIHR in March 2021 for accuracy and currency. The NIHR endorses this resource. The previous version was referenced as: INVOLVE (2012) Briefing notes for researchers: involving the public in NHS, public health and social care research. INVOLVE, Eastleigh.

The authors of the 2012 version of the Briefing Notes for Researchers were Helen Hayes, Sarah Buckland and Maryrose Tarpey, who used to work for the INVOLVE Coordinating Centre. Additional contributors to thank for their involvement in the development of the 2012 version are: Ann Louise Caress, Alison Ford, Lesley Roberts, Carer, Kati Turner, Derek Ward, Tracey Williamson, Sarah Howlett, Lucy Simons, Philippa Yeeles, Gill Wren, Paula Davis, Sandra Paget, Doreen Tembo, Christine Vial.

Library Data Resources for Social Data Analytics

Welcome! Start here

Introduction

Learn how to write a literature review, review background guides and resources to refine your question, use keywords to develop a search strategy, adopt a critical approach to research.

Find social science data
Analyze data
Scholarly resources: peer-reviewed articles
Scholarly resources: books and e-books
Writing & Citing
More resources

How do you go from a research interest to a complete resaerch project? This question will overview some skills you can use in surveying the relevant literature and developing a search strategy .

A literature review is a summary and synthesis of scholarly research on a specific topic. It should answer questions such as:

What research has been done on the topic?
Who are the key researchers and experts in the field?
What are the common theories and methodologies?
Are there challenges, controversies, and contradictions?
Are there gaps in the research that your approach addresses?

Learn more at the full guide: Literature Reviews

How do researchers in your discipline approach the topic you'd like to investigate? Before diving into case studies, working papers, and other specific evidence, it may help you to take a step back and look at what we call background resources . These include:

Handbooks and subject encyclopedias
Annual reviews
Books with an overview/pedagogical approach

Below are some specific places to start with sociology research:

Oxford Handbooks Online - Results in Sociology OHO is a collection of the best Handbooks in 14 subject areas. The series contain in-depth, high-level articles by scholars at the top of their field. All Handbooks are available online as well as in print, and monthly updates introduce articles in advance of print publication. This link will direct you to articles across all handbooks which are tagged with Sociology (n > 1800)
Annual Review of Sociology Like Handbooks, annual reviews are curated publications that attempt to capture the most important developments across a field - in this case, year by year. You may find a direct source to cite here; read a review article to add to your understanding; and/or follow the works cited within a review article to find relevant articles for your research.

Did you know that you can vastly improve your ability to find key relevant sources by employing a keyword strategy? Keywords are the specific words you identify as useful for investigating your research question, and the words you often put into database searches. But there's more nuance in finding, refining, and experimenting with keywords than you may expect.

Below is a quick video tutorial (6 minutes) about search strategy, and a link to our full guide for learning more.

Search strategies

Note: This section is still in-progress and based on the work of our talented colleague, Dr. Leo Lovemore!

The Brown University Library facilitates and supports critical research practices that ask how bias, power, and uneven access to resources are at work in the labor of scholarship.

Consider reflecting on the following set of questions and resources to develop and integrate critical perspectives into your research plans:

What makes a source authoritative in sociology? Who decides?
How do dynamics of power shape citational practice?
What does it mean to decolonize knowledge?
Is sociology an objective deicipline? What counts as evidence?
How is bias embedded in knowledge-making?

Key resources for learning more:

" Authority is Constructed and Contextual ," Framework for Information Literacy for Higher Education . ACRL, 2016.
" Re-examining Authority ," Frame: Authority Is Constructed and Contextual , PALNI Consortium, October 27, 2022.

" Why Citational Practice ?" Teaching Citational Practice .

Shanelle E. Kim, " The Paths We Were Told To Follow" A Citational Practice Worksheet for Students ." Teaching Citational Practice 1 (2021): Progressive Pedagogies for Humanities Research and Citation.

Annabel L. Kim, “ The Politics of Citation. ” Diacritics 48, no. 3 (2020): pp. 4–9.

Eve Tuck and K.Wayne Yang, " Decolonization is not a Metaphor, " Decolonization: Indigeneity, Education & Society 1, no. 1 (2012): 1-40.
Adam J. P. Gaudry. “ Insurgent Research. ” Wicazo Sa Review 26, no. 1 (2011): 113–36.
Donna Haraway, “ Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective. ” Feminist Studies 14, no. 3 (1988): 575–99.
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Last Updated: Aug 30, 2024 4:01 PM
URL: https://libguides.brown.edu/sda

Library Intranet

2024 Theses Doctoral

Detecting and Explaining Emotional Reactions in Personal Narrative

Turcan, Elsbeth

It is no longer any secret that people worldwide are struggling with their mental health, in terms of diagnostic disorders as well as non-diagnostic measures like perceived stress. Barriers to receiving professional mental healthcare are significant, and even in locations where the availability of such care is increasing, our infrastructures are not equipped to find people the support they need. Meanwhile, in a highly-connected digital world, many people turn to outlets like social media to express themselves and their struggles and interact with like-minded others. This setting---where human experts are overwhelmed and human patients are acutely in need---is one in which we believe artificial intelligence (AI) and natural language processing (NLP) systems have great potential to do good. At the same time, we must acknowledge the limitations of our models and strive to deploy them responsibly alongside human experts, such that their logic and mistakes are transparent. We argue that models that make and explain their predictions in ways guided by domain-specific research will be more understandable to humans, who can benefit from the models' statistical knowledge but use their own judgment to mitigate the models' mistakes. In this thesis, we leverage domain expertise in the form of psychology research to develop models for two categories of emotional tasks: identifying emotional reactions in text and explaining the causes of emotional reactions. The first half of the thesis covers our work on detecting emotional reactions, where we focus on a particular, understudied type of emotional reaction: psychological distress. We present our original dataset, Dreaddit, gathered for this problem from the social media website Reddit, as well as some baseline analysis and benchmarking that shows psychological distress detection is a challenging problem. Drawing on literature that connects particular emotions to the experience of distress, we then develop several multitask models that incorporate basic emotion detection, and quantitatively change the way our distress models make their predictions to make them more readily understandable. Then, the second half of the thesis expands our scope to consider not only the emotional reaction being experienced, but also its cause. We treat this cause identification problem first as a span extraction problem in news headlines, where we employ multitask learning (jointly with basic emotion classification) and commonsense reasoning; and then as a free-form generation task in response to a long-form Reddit post, where we leverage the capabilities of large language models (LLMs) and their distilled student models. Here, as well, multitask learning with basic emotion detection is beneficial to cause identification in both settings. Our contributions in this thesis are fourfold. First, we produce a dataset for psychological distress detection, as well as emotion-infused models that incorporate emotion detection for this task. Second, we present multitask and commonsense-infused models for joint emotion detection and emotion cause extraction, showing increased performance on both tasks. Third, we produce a dataset for the new problem of emotion-focused explanation, as well as characterization of the abilities of distilled generation models for this problem. Finally, we take an overarching approach to these problems inspired by psychology theory that incorporates expert knowledge into our models where possible, enhancing explainability and performance.

Computer science
Mental health services
Artificial intelligence
Natural language processing (Computer science)
Emotions--Psychological aspects
Emotion recognition
Computer multitasking
Distress, (Psychology)

thumnail for Turcan_columbia_0054D_18662.pdf

More About This Work

DOI Copy DOI to clipboard

This paper is in the following e-collection/theme issue:

Published on 26.8.2024 in Vol 26 (2024)

Acceptance of Social Media Recruitment for Clinical Studies Among Patients With Hepatitis B: Mixed Methods Study

Authors of this article:

Original Paper

Theresa Willem 1, 2, 3 * , MA ;
Bettina M Zimmermann 1, 2, 4 * , PhD ;
Nina Matthes 2 ;
Michael Rost 5 , PhD ;
Alena Buyx 2 , Prof Dr Med

1 Institute of Molecular Immunology, Klinikum Rechts der Isar, TUM School of Medicine and Health, Technical University of Munich, Munich, Germany

2 Institute of History and Ethics in Medicine, TUM School of Medicine and Health, Technical University of Munich, Munich, Germany

3 Department of Science, Technology and Society (STS), School of Social Sciences and Technology, Technical University of Munich, Munich, Germany

4 Institute of Philosophy, Multidisciplinary Center for Infectious Diseases, University of Bern, Bern, Switzerland

5 Institute for Biomedical Ethics, University of Basel, Basel, Switzerland

*these authors contributed equally

Corresponding Author:

Bettina M Zimmermann, PhD

Institute of History and Ethics in Medicine

TUM School of Medicine and Health

Technical University of Munich

Ismaninger Str. 22

Munich, 81675

Phone: 49 89 4140 4041

Email: [email protected]

Background: Social media platforms are increasingly used to recruit patients for clinical studies. Yet, patients’ attitudes regarding social media recruitment are underexplored.

Objective: This mixed methods study aims to assess predictors of the acceptance of social media recruitment among patients with hepatitis B, a patient population that is considered particularly vulnerable in this context.

Methods: Using a mixed methods approach, the hypotheses for our survey were developed based on a qualitative interview study with 6 patients with hepatitis B and 30 multidisciplinary experts. Thematic analysis was applied to qualitative interview analysis. For the cross-sectional survey, we additionally recruited 195 patients with hepatitis B from 3 clinical centers in Germany. Adult patients capable of judgment with a hepatitis B diagnosis who understood German and visited 1 of the 3 study centers during the data collection period were eligible to participate. Data analysis was conducted using SPSS (version 28; IBM Corp), including descriptive statistics and regression analysis.

Results: On the basis of the qualitative interview analysis, we hypothesized that 6 factors were associated with acceptance of social media recruitment: using social media in the context of hepatitis B (hypothesis 1), digital literacy (hypothesis 2), interest in clinical studies (hypothesis 3), trust in nonmedical (hypothesis 4a) and medical (hypothesis 4b) information sources, perceiving the hepatitis B diagnosis as a secret (hypothesis 5a), attitudes toward data privacy in the social media context (hypothesis 5b), and perceived stigma (hypothesis 6). Regression analysis revealed that the higher the social media use for hepatitis B (hypothesis 1), the higher the interest in clinical studies (hypothesis 3), the more trust in nonmedical information sources (hypothesis 4a), and the less secrecy around a hepatitis B diagnosis (hypothesis 5a), the higher the acceptance of social media as a recruitment tool for clinical hepatitis B studies.

Conclusions: This mixed methods study provides the first quantitative insights into social media acceptance for clinical study recruitment among patients with hepatitis B. The study was limited to patients with hepatitis B in Germany but sets out to be a reference point for future studies assessing the attitudes toward and acceptance of social media recruitment for clinical studies. Such empirical inquiries can facilitate the work of researchers designing clinical studies as well as ethics review boards in balancing the risks and benefits of social media recruitment in a context-specific manner.

Introduction

Benefits and risks of using social media recruitment for clinical studies.

Recruiting clinical study participants through social media has the potential to increase the recruitment accrual in a cost-effective way [ 1 ]. Consequently, social media recruitment has been increasingly applied for clinical studies, often in parallel with other recruitment strategies. However, social media recruitment still bears a host of challenges. First, maintaining a social media presence and community management can be resource intensive. Second, when used as a stand-alone recruiting method, it might yield a cohort of limited demographic representativeness. Finally, social media recruitment comes with ethical issues, particularly when used to recruit for clinical studies [ 2 ]. Because social media recruitment includes reaching potential research participants outside a clinical setting and in a public online space without direct personal contact, risks related to social stigma, privacy infringement, loss of trust, and psychological harm have been discussed [ 3 ]. To mitigate some of these risks, prioritizing investigator transparency and obtaining explicit consent when recruiting from others’ social network was suggested [ 4 ]. Yet, because the activities of social media platforms are primarily unregulated and partly belong to large global technology companies, activities conducted on social media, including study recruitment, can never be fully controlled by researchers or institutions. Remaining privacy-infringing risks include hidden data collection and profiling, particularly problematic for patients carrying vulnerable characteristics [ 5 ].

Early studies assessing social media recruitment for clinical studies focused on the effectiveness of the method. For example, Frandsen et al [ 3 ] used social media recruitment for a smoking cessation trial and compared their cohort recruited from a Facebook-based approach to cohorts resulting from other recruitment methods. They found no differences between the cohorts regarding socioeconomic or smoking characteristics, except that participants recruited via Facebook were significantly younger. Wisk et al [ 4 ] recruited college students with type 1 diabetes, a hard-to-reach population, using a variety of outreach channels, including social media. They found that Facebook was the most successful recruitment method. Guthrie et al [ 5 ] found that Facebook advertising was significantly cheaper than recruiting via mail. While these studies allow insights into the utility of social media recruitment from the perspective of researchers, studies assessing patients’ perspectives and attitudes toward social media for clinical study recruitment are lacking. This study aims to deliver first evidence on patient attitudes toward social media recruitment, focusing on patients with hepatitis B.

Patients With Hepatitis B and Social Media

Patients with hepatitis B are a particularly interesting cohort to study acceptance for social media recruitment as the particularities of the disease exhibit potentially confounding factors for their attitudes toward social media recruitment. First, there is robust empirical evidence that patients with hepatitis B can be subject to social stigma [ 6 - 10 ]. Therefore, the risk of public exposure to hepatitis B diagnosis on social media renders them—and patients with other stigmatized traits and conditions—particularly vulnerable in the context of social media recruitment [ 11 ]. Second, hepatitis B in Europe is particularly prevalent in certain immigrant populations, which are at risk of being neglected for clinical studies due to language barriers and lack of health care access. Social media recruitment can help include patient populations who otherwise would be disregarded for clinical studies or are hard to reach [ 12 - 14 ].

Study Rationale and Objectives

However, the effectiveness of social media recruitment crucially hinges on technology acceptance. To date, the attitudes of patients regarding social media recruitment are underexplored. Addressing this gap, this mixed methods study assesses factors predicting the acceptance of social media recruitment among patients with hepatitis B. On the basis of qualitative individual interviews with 6 patients with hepatitis B and 30 multidisciplinary experts and a literature review, we hypothesized that general social media use (hypothesis 1), social media literacy (hypothesis 2), interest in clinical studies (hypothesis 3), trust (hypothesis 4), privacy needs (hypothesis 5), and perceived stigma (hypothesis 6) are associated with acceptance of social media recruitment.

Study Design

This study is part of the European Union–funded international research consortium “TherVacB—A Therapeutic Vaccine to Cure Hepatitis B,” work package 6 (ethical, legal, and social aspects of social media recruitment). Using a mixed methods design, we first conducted an explorative qualitative multistakeholder interview study assessing the ethical, legal, social, and practical implications of social media recruitment for clinical studies [ 2 ]. The hypotheses investigated in this paper are based on these interviews and a conceptual literature review mapping the ethical implications of social media recruitment [ 11 ]. The reporting of this study followed the Strengthening the Reporting of Observational Studies in Epidemiology guidelines [ 15 ].

Survey Recruitment

On the basis of preliminary statistical power analysis and pragmatic considerations of available study participants, we aimed for 200 responses in a recruitment period of 7 months. Due to administrative constraints, including the COVID-19 pandemic, the overall recruitment period was prolonged by 5 months (total recruitment period 12 months, June 4, 2022, to May 31, 2023), and the recruitment period varied among the recruiting clinics ( Multimedia Appendix 1 ).

Adult, German-speaking patients diagnosed with acute or chronic viral hepatitis B were recruited from 3 large university hospitals in Germany. We chose such a venue-based recruitment methodology because it is considered one of the best options to recruit representative samples from hard-to-reach populations [ 16 ]. The clinical staff was instructed to distribute the study information leaflet to every eligible patient in the study period, explaining the implications of the study and inviting them to fill out the questionnaire. To limit recruitment bias and enhance sample representativeness, study nurses were briefed to avoid self-selected restrictions in recruitment and, if possible, to give a questionnaire to every incoming patient with hepatitis B who understood German sufficiently well. However, because of the administrative burden of the clinical staff, only 30.4% (285/939) of the estimated eligible incoming patients received the questionnaire ( Multimedia Appendix 1 ). Because this low distribution number results from administrative burden in the clinic, we do not expect this to have a relevant impact on representativeness (refer to the Limitations subsection under the Discussion section). Completed questionnaires (207/285, 72.6% of the distributed questionnaires; Multimedia Appendix 1 ) were collected in the recruiting hospital and sent to the authors via mail.

Survey Construction

The dependent variable (acceptance of social media recruitment) was constructed based on the Technology Acceptance Model [ 17 , 18 ], involving the dimensions of perceived usefulness; perceived ease of use, intentions, and problem awareness; and proved good internal consistency (Cronbach α=0.863). Possible predictors for social media recruitment acceptance were identified based on the abovementioned hypotheses and operationalized by, if possible, existing validated questionnaires. For 3 (33%) of the 9 independent variables, we used existing validated questionnaires that were found to be of excellent reliability: the social media literacy scale (14 items, Cronbach α=0.947) [ 19 ], the Berger HIV Stigma Scale for use among patients with hepatitis C virus (6 items, Cronbach α=0.931) [ 20 ], and the Privacy Attitude Questionnaire [ 21 ]. For the latter, we included a shortened version that covered the dimensions developed in the Privacy Attitude Questionnaire but targeted it toward the hepatitis B context. From these dimensions, 2 subscales were created: secrecy of hepatitis B diagnosis (2 items, Cronbach α=0.623) and data privacy needs regarding hepatitis B diagnosis (2 items, Cronbach α=0.587).

For the remaining variables, no validated tools existed. Hence, we developed new scales for each variable of interest. As indicated by internal consistency, these were of moderate, good, or excellent reliability: general social media use (8 items, Cronbach α=0.676), hepatitis B–related social media use (6 items, Cronbach α=0.906), interest in clinical studies (2 items, Cronbach α=0.895), and trust in information sources regarding hepatitis B (11 items, Cronbach α=0.905; 2 subscales were created: trust in medical information sources—4 items, Cronbach α=0.784 and trust in nonmedical information sources, ie, traditional media, social media, other patients, poster advertisements, etc—7 items, Cronbach α=0.881). In addition to these adapted and self-developed scales, we included 4 demographic variables in the regression model (age, gender, education, and mother tongue as an indicator of migration background). A preliminary version of the questionnaire was discussed with 3 experts from the fields of infectiology and bioethics and then adapted and shortened based on their comments. We then performed cognitive pretesting [ 22 ] with 6 patients with hepatitis B, leading to minor changes. The full questionnaire is provided in Multimedia Appendix 2 .

Statistical Analysis

Using SPSS (version 28.0; IBM Corp), we (1) performed descriptive analyses, (2) determined independent factors associated with participants’ acceptance of social media as a recruitment tool for clinical hepatitis B studies through multiple linear regression analysis, and (3) performed additional exploratory bivariate analyses of hepatitis B–related stigma (ie, correlation, independent 2-tailed t test). The statistical significance level was set at P <.05. For multiple linear regression analysis, assumption checks were performed before the interpretation of the model ( Multimedia Appendix 3 ). For the scale measuring the frequency of social media use, missing values were replaced by “0” (ie, “never”), assuming that participants did not tick a box, as they did not know the respective social media platform. Overall, 71.3% (139/195) of the participants completed all items, resulting in 3.66% (478/13,065) missing values and 81% (54/67) incomplete variables.

For the linear regression analysis, theoretical considerations and hypotheses derived from our previous qualitative study determined predictor selection. In addition, the sample size or predictor ratio a priori determines variable selection for regression modeling. According to Harrell [ 23 ], a fitted regression model is likely to be reliable when p<m/10 or p<m/20 (average requirement: p<m/15), where p is the number of predictors and m is the sample size. Applying this requirement to our sample size (N=195) and having missing data, we preliminarily limited the number of included predictors to 11. The following 11 predictors were included in the regression model: general social media use, social media literacy, hepatitis B–related social media use, interest in clinical studies, trust in medical information sources regarding hepatitis B (dichotomized to meet assumption of linearity), trust in nonmedical information sources regarding hepatitis B, secrecy of hepatitis B (dichotomized to meet assumption of linearity), data privacy needs regarding hepatitis B (dichotomized to meet assumption of linearity), perceived stigma, age, and education. Assumptions checks for regression analyses are presented in Multimedia Appendix 3 .

Ethical Considerations

For study consent, participants were asked to confirm having read and understood the study information and to consent to the study participation by checking a consent box at the beginning of the questionnaire. Only questionnaires with this box checked were included in the analysis (12/207, 5.8% of the questionnaires were excluded for that reason; Multimedia Appendix 1 ). The ethics committees from the Technical University of Munich (12/22-S-NP), Hannover Medical School (10368_BO_K_2022), and University Clinic Leipzig (189/22-lk) approved the study.

Deriving Hypotheses

After conducting an in-depth literature review on the ethical and social challenges surrounding social media recruitment for clinical studies [ 11 ], we developed 2 semistructured interview guides, one targeted at patients with hepatitis B and the other targeted at multidisciplinary experts. On the basis of interviews with 6 patients that were triangulated with findings from 30 interviews with experts, we qualitatively assessed what factors could be associated with the acceptance of social media recruitment for clinical hepatitis B studies. On the basis of these findings, we derived hypotheses to be tested quantitatively in a survey among patients with hepatitis B in Germany ( Textbox 1 ).

Hypothesis 1: The more patients use social media for hepatitis B, the higher their acceptance of using social media as a recruitment tool for clinical hepatitis B studies.
Hypothesis 2: Digital literacy is associated with social media acceptance.
Hypothesis 3: The higher the general interest in clinical study participation, the higher the acceptance of social media recruitment for clinical studies.
Hypothesis 4: The more patients trust information sources for hepatitis B, the higher their acceptance of social media recruitment.
Hypothesis 5: The more patients value privacy, the lower their acceptance of using social media as a recruitment tool for clinical hepatitis B studies.
Hypothesis 6: The higher the perceived stigma of patients with hepatitis B, the lower their acceptance of social media as a recruitment tool for clinical studies.

Intensity of Using Social Media in the Context of Hepatitis B

Most of the patients we talked with were rejecting the idea of being recruited for a clinical hepatitis B study via social media. However, patients who were more actively involved in their own recruitment tended to have more accepting attitudes. For example, patients who described using social media as a tool for informing themselves about potential clinical studies related to their disease were less opposed to being recruited via the same channel. One patient included search engines in their definition of social media and mentioned the following:

You can also advertise on Google. That is quasi/I think it’s better if I [as a patient] search for a study. For example, I search for a study related to psoriasis and enter that term in Google—when the advertisement for a psoriasis study is then made so that it shows up as the first suggestion...I think that’s better because in these instances I’m already searching, so I take the first step, I search for the study. And then the study, or the advertisement must be done in such a way that I can find it. So, I take the first step and then I land on the study. [Patient 3]

Similarly, patients who joined shared interest groups, such as patient groups on Facebook, which gather people who deliberately want to share their own experiences with the disease and learn from others’ experiences, were more open toward the idea of being approached and recruited within such groups.

These insights indicate that patients who were already active on social media and found it useful for their personal disease management were more open to being recruited via social media. This led us to the following hypothesis: (H1) The more patients use social media (for hepatitis B), the higher their acceptance of using social media as a recruitment tool for clinical (hepatitis B) studies.

Digital Literacy

The patients we interviewed represented a variety of levels regarding social media literacy. While some patients have had very limited contact with social media, others were very active on social media. One patient even described social media content management as part of their daily job. Another had conducted a research web-based questionnaire for which they were recruiting on the web. Analyzing the interviewees’ accounts about their experience with social media, and partially their use habits, we found a scattered connection to social media recruitment acceptance: those who were considered to have higher digital literacy skills were, in some instances, likely to accept social media as a recruitment tool for clinical hepatitis B studies because they perceived other forms of recruitment as outdated:

I think we are living in a time that you have to use social media because if you don’t use it...sending a letter or put[ting it] in the newspaper, will not help you. [Patient 6]

On the other end of the spectrum, however, patients with very low digital literacy skills and relatedly very little reported use of social media, or digital media in general, in some instances had difficulties delimiting the concept of social media as such. Presumably, their less nuanced understanding of social media as a concept makes them less strictly opposed to being recruited for a clinical study via social media. One patient, for example, favored personal contact for study recruitment at first but then revised their statement and reported that being helped was even more important than personal contact:

Yes definitely. If it was something important it would be best if we met at a clinic, or I don’t know where this study is being done.... But even via Facebook or Messenger.... Yeah, actually never mind, I don’t care actually. [Patient 2]

While the interviews suggested a connection between the acceptance of social media recruitment for clinical hepatitis B studies and digital literacy, it remained unclear whether acceptance was higher with high or low digital literacy. Consequently, we formulated the nondirectional hypothesis that (H2) digital literacy is associated with social media acceptance (SMA).

Interest in Clinical Studies

Some participating patients expressed particularly high interest in participating in clinical studies about hepatitis B. One patient explained to us that they were “very, very happy to support studies” (patient 5), and another patient told us the following: “I actually want to help. So, that’s why I get in” (patient 6). Patients like this, who reported an increased willingness to participate in clinical studies in general, seemed more susceptible to social media as a recruitment tool, too.

Another patient perceived it as beneficial that online recruitment made them less dependent on their physician to refer them to the study:

I don’t know if my physician is even internet-savvy, he’s a bit older. And well, then I thought, I have to see for myself because I’m not sure how competent he is with such things. What I mean is, it would be nicer if I...could google for [a clinical trial], land on a platform, search for [relevant studies], see all the information and can get in touch right away and say: “Hey, I am interested in your study. I would like to participate.” Because in my case, the...specialists didn’t even know that this [study] existed.... That’s stupid and got me pretty upset.” [Patient 3]

None of the patients interviewed reported that they were generally against participation in clinical studies. This is likely a recruitment bias of this qualitative interview study, which made it difficult to interrogate if patients who are less accepting of clinical studies are also less accepting of social media recruitment. Yet, based on the apparent influence of this aspect in 2 (33%) of 6 patient interviews, we formulated the following hypothesis: (H3) The more patients are interested in clinical studies, the more they accept social media as a recruitment tool for clinical hepatitis B studies.

The role of trust in health care professionals, social media platforms, and other recruitment channels was a very salient aspect of all interviews. Illustrating this, one participating patient with hepatitis B stated the following as a reason for being against social media recruitment:

I just feel such a distrust of social media. Any information I share there, I’m not completely comfortable with/It’s just not a safe way for me to share information. [Patient 4]

Other patients were more open to social media recruitment if they knew the source of the advertisement and assigned relevant expertise to them:

It would be okay for me [if someone would contact me on social media to ask whether I would like to meet for a clinical study, as long as] the person is qualified in that direction and is well versed in this expertise. [Patient 2]

[R]ecruiting is normally working if the person that suggests it is a person that you trust or you know. So because she was a person I knew from [redacted], then I clicked the link and I got in. Normally we know, of course, that social media is also a trap for many, I don’t know, viruses and this kind of thing. So you don’t open everything if you don’t trust the link.... If I would see it on, I don’t know, social media and as we know, because you have these cookies that you accept, then immediately, they know that you have something or you are looking for some article. Then this kind of things will pop up. Again, it’s all about trusting links. I’m not sure how much I will get in something that is suggesting from just because I click on a link. [Patient 6]

More implicitly, another patient emphasized that the clinical setting was the place for them to discuss things in the context of hepatitis B, not social media:

This channel through the [clinic in Germany]... I have a very good opinion of the hospital and I have always been well taken care of there. That is the only channel through which I would talk about my condition and about my/yes. [Patient 1]

We analyze the aspect of trust in a separate publication (Willem, T, et al, unpublished data, January 2024) in detail and hypothesize the following: (H4) The more patients trust information sources, the higher their acceptance of social media recruitment. The hypothesis was operationalized for trust in medical information sources (H4a) and trust in nonmedical information sources (H4b).

A particular concern of most patients we spoke with was their privacy. Privacy is a multifaceted and complex concept, and we found that participants referred to different dimensions of privacy: (1) data privacy, defined as the general attitude toward protective measures that empower patients or users to make their own decisions about who can process their data for which purpose; and (2) privacy related to the perceived secrecy of the hepatitis B diagnosis.

First, regarding data privacy, several patients perceived recruitment via social media as dubious and suspected some form of data leakage or malicious data collection goals behind the reach outs. This view applied irrespectively to how they would be approached on social media (eg, advertisement banners in their social media timelines or personal contact requests via social media messengers by health care professionals). For example, a patient who reported on being in the process of decreasing their social media use to protect their privacy also said that if someone contacted them on social media regarding clinical study participation, they would “find that very strange, because [I] would ask [my]self, where did they get this information?” and reported that they would feel that this “would rob quite a lot of privacy” (patient 5). Another patient, who reported using WhatsApp as their only social media, explained that by saying that they “consider social media to be useful in some instances;” however, they continued, “It’s too risky for me with my private data and so much advertising. This, for me, trumps all advantages of social media recruitment” (patient 4).

Regarding the second privacy dimension, secrecy, several patients commented on their hepatitis B diagnosis being a very private, intimate matter:

This condition is in my most private, intimate sphere…. And you might be right, I never thought about it in this way, but [my avoiding engaging on social media regarding hepatitis B] may be related to the fact that content I pass on via WhatsApp can be passed on thousands of times with one click. [Patient 1]

One patient replied to a question regarding their attitude toward being contacted by a study center via social media that they “would find that difficult”. As a reason, this patient explained the following:

[T]hat’s just the problem: it ends up on social media. See, if someone writes: “Hey, I would like to ask you about your hepatitis B, whether you would participate in a study?” Then this information is out there on social media.... That’s why I had a very, very good feeling when my doctor approached me about [this interview study] and that it just went through the clinic. If she had said, “Look, someone is approaching you via social media,” or something, then I would have said no, right? Because I wouldn’t have wanted to, because these data/social media make money because they have data. They run the ads based on your data and what you type in there or what you say or whatever. And I don’t want that associated with my disease. [Patient 5]

These findings led us to the following hypothesis: (H5) The more patients value privacy, the lower their acceptance of using social media as a recruitment tool for clinical hepatitis B studies. The hypothesis was operationalized for secrecy (H5a) and data privacy (H5b).

Perceived Stigma

Several interviewed patients with hepatitis B reported fear of being stigmatized if their social environment found out about their diagnosis as an important reason against social media recruitment. One patient, who mentioned that only their closest family members knew about their diagnosis, expressed fear that other people learning the diagnosis would lead to social exclusion:

A broken leg or surgery on the knee or hip. This is apparent to everyone. And everyone assumes that it will heal at some point and that there is no potential infectious danger from these people. Whereas in the case of infectious diseases, no one can assess that, and people get socially excluded very quickly.... And this is why I am so cautious with my data. [Patient 1]

A similar view was shared by patient 5. Another patient added that perception of stigma differed depending on the context:

I come from [Eastern European country], I have moved to Germany. So here the mentality is a little bit different. If you say to someone, I have Hepatitis, he is okay with it. He says: “Oh, is not a problem. Normally here we are vaccinated against it.” If you are going to [Eastern European country] and say: “I have Hepatitis B,” it’s like you have a huge disease that can just be taken by a handshake [laughs]. And so I think that’s why I’m going on the conservative site. [Patient 6]

The connection between the stigma connected to hepatitis B and the social media–connected perceived privacy risks established by several interview participants led us to the following hypothesis: (H6) The higher the perceived stigma of patients, the lower their acceptance of social media as a recruitment tool for clinical hepatitis B studies.

Survey Results

Participant characteristics.

A total number of 195 eligible questionnaires were included in the statistical analysis of the survey study. Table 1 displays the characteristics of the patients with hepatitis B who participated in the study: more than half of the participants (108/195, 55.4%) were aged between 30 and 49 years. Just above half (110/195, 56.4%) reported having lower educational degrees than Abitur (German equivalent to a high school degree). More than half of the participants (111/195, 56.9%) had another mother tongue than German (only). All participants had a chronic hepatitis B infection, as per the inclusion criterion of this study.

Characteristics			Participants, n (%)

	Male	101 (51.8)
	Female	88 (45.1)
	No answer	6 (3.1)

	18-29	16 (8.2)
	30-39	50 (25.6)
	40-49	58 (29.7)
	50-59	38 (19.5)
	>60	24 (12.3)
	No answer	9 (4.6)

	Yes	71 (36.4)
	No	110 (56.4)
	No answer	14 (7.2)

	German	101 (51.8)
	Other	111 (56.9)
	No answer	12 (6.2)

Description of Scales

The questionnaire included 7 scales that were measured through several items ( Table 2 and Multimedia Appendices 1 and 4 ).

The level of acceptance for social media recruitment was measured through the SMA scale, which was calculated based on 4 questionnaire items (P6.01 to P6.04; Multimedia Appendix 4 ). Each item was measured by a 5-point Likert scale, ranging from 0 (completely disagree) to 4 (completely agree). Items P6.01 (“Social media are well suited to make patients aware of studies on new hepatitis B treatments”) and P6.02 (“Social media increase the likelihood of success in hepatitis B clinical trials”) formed the subscale of the perceived usefulness of social media recruitment and received moderate agreement (P6.01: mean 1.99, SD 1.23; P6.02: mean 1.81, SD 1.12). Items P6.03 and P6.04 formed the SMA subscale on the perceived usefulness of social media recruitment. Item P6.03 (“I would be recruited via social media for a hepatitis B clinical trial”) received particularly low acceptance (mean 1.13, SD 1.13; Multimedia Appendix 4 ). P6.04 (I would use social media to learn about hepatitis B clinical trials) received a higher mean acceptance score than P6.03 (mean 1.58, SD 1.23; Multimedia Appendix 4 ).

The overall SMA score was calculated by summarizing the scores from items 6.01 to 6.04 and ranged from 0 (no acceptance) to 16 (full acceptance; mean 6.48, SD 3.03; Table 2 ). While 28.7% (56/195) of the respondents rejected social media recruitment with an SMA score of <5, only 10.2% (20/195) of the respondents accepted social media recruitment with an SMA score of >11 ( Table 3 ).

	Valid, n (%)	Items, n (%)	Scale, median (range )	Values, mean (SD)
General social media use	195 (100)	8 (15)	11 (0-32)	11.22 (6.51)
Social media literacy (hypothesis 2)	174 (89.2)	14 (25)	41 (0-56)	37.58 (14.60)
Hepatitis B–related social media use (hypothesis 1)	181 (92.8)	6 (11)	3 (0-24)	5.22 (5.61)
Interest in clinical studies (hypothesis 3)	187 (95.9)	2 (4)	6 (0-8)	5.53 (2.45)
Trust in medical information sources	180 (92.3)	4 (7)	11 (0-16)	10.27 (3.64)
Trust in nonmedical information sources (hypothesis 4)	175 (89.7)	7 (13)	8.5 (0-28)	8.36 (5,76)
Acceptance of social media recruitment (dependent variable)	178 (91.3)	4 (7)	6 (0-16)	6.48 (3.93)
Secrecy (hypothesis 5a)	185 (94.9)	2 (4)	2 (0-8)	2.25 (2.09)
Data privacy (hypothesis 5b)	186 (95.4)	2 (4)	7 (0-8)	6.25 (2.10)
Perceived stigma (hypothesis 6)	180 (92.3)	6 (11)	3.5 (0-24)	5.52 (6.02)

a Items were measured through a 5-point Likert scale, ranging from 0 (completely disagree) to 4 (completely agree).

Social media acceptance score	Responses, n (%)
0	20 (10.3)
1	4 (2.1)
2	6 (3.1)
3	8 (4.1)
4	18 (9.2)
5	14 (7.2)
6	20 (10.3)
7	20 (10.3)
8	17 (8.7)
9	12 (6.2)
10	8 (4.1)
11	11 (5.6)
12	7 (3.6)
13	7 (3.6)
14	2 (1)
15	1 (0.5)
16	3 (1.5)
Missing	17 (8.7)

Regression Analysis

Using multiple linear regression analyses, we evaluated the predictors of participants’ acceptance of social media as a recruitment tool for clinical hepatitis B studies. Testing the statistical significance of the overall model fit, the F test indicated that the predictors included in the model substantially contributed to the explanation of the dependent variable ( Table 4 ). Regression analysis revealed that social media use for hepatitis B, interest in clinical studies, trust in nonmedical information sources, and hepatitis B secrecy independently predicted acceptance of social media as a recruitment tool for clinical hepatitis B studies. More precisely, the higher the social media use for hepatitis B, the higher the interest in clinical studies, the more trust in nonmedical information sources, and the less secret hepatitis B, the higher the acceptance of social media as a recruitment tool for clinical hepatitis B studies ( Table 4 ).

	Unstandardized coefficients B (SE)	β	test ( )	value	Tolerance	VIF
Constant	4.007 (1.935)	—	2.071 (127)	.04	—	—
General social media use	0.060 (0.051)	.098	1.175 (127)	.24	.628	1.593
Social media literacy	–0.002 (0.025)	–.008	–0.096 (127)	.92	.600	1.668
Hepatitis B–related social media use	0.279 (0.053)	.391	5.299 (127)	<.001	.804	1.234
Interest clinical studies	0.283 (0.127)	.171	2.217 (127)	.03	.732	1.366
Trust medical information sources	–0.601 (0.683)	–.079	–0.879 (127)	.38	.546	1.830
Trust in nonmedical information sources	0.252 (0.058)	.359	4.307 (127)	<.001	.632	1.583
Secrecy	–1.299 (0.542)	–.171	–2.399 (127)	.02	.861	1.161
Data privacy	–0.765 (0.577)	–.099	–1.326 (127)	.19	.792	1.262
Perceived stigma	–0.003 (0.048)	–.004	–0.057 (127)	.95	.770	1.299
Age	–0.052 (0.028)	–.151	–1.842 (127)	.07	.648	1.543
Education	0.770 (0.567)	.102	1.357 (127)	.18	.782	1.278

a Overall model fit: F 11,127 =9.221, P <.001; R 2 =0.444; N=139.

b VIF: variance inflation factor.

c Not applicable.

Principal Findings

We present the first empirical study investigating how adult patients with hepatitis B accept social media recruitment for clinical studies. Social media have been suggested to increase recruitment accrual, particularly for hard-to-reach populations [ 13 , 14 , 24 ]. Our study provides a more fine-grained contextualization of this potential. We find that acceptance of social media recruitment among patients with hepatitis B is associated with higher ongoing activity on social media with regard to hepatitis B (confirming H1), a generally high interest in participating in clinical studies for hepatitis B (confirming H3), and high trust recruitment channels outside the clinical setting (confirming H4a). Patients with these characteristics are, consequently, recruitable via social media under the assumptions that (1) patients are most effectively recruited via social media if they accept this channel as a recruitment method and (2) people who do not accept this recruitment channel should also not be recruited in this way.

Yet, 54 (27.7%) out of 195 participants reported an acceptance score of <5 and, thus, rejected being recruited via social media. Moreover, only 20 (10.3%) out of 195 participants reported an acceptance score >11, indicating high acceptance. These findings indicate that recruitment success via social media might be limited among patients with hepatitis B in Germany and underline the importance of using multiple recruitment channels to facilitate diversity and equitable health care access, particularly for patient groups considered vulnerable [ 11 ].

Contrary to what we had hypothesized, SMA was not associated with digital literacy (rejecting H2), data privacy needs (rejecting H5b), and perceived hepatitis B–related stigma (rejecting H6), although reported secrecy around hepatitis B diagnosis was a predictor (confirming H5a). Moreover, trust in medical information sources and demographic variables (age and education) as well as the overall frequency of using social media were not associated with SMA. The results for H2 and H4b are not surprising, as the preceding qualitative interviews did not explicitly indicate a linear connection between digital literacy and social media recruitment acceptance. Our study cannot exclude the possibility that there might be a potential nonlinear association, but another survey study also found that digital literacy did not directly affect the intention to use digital technology [ 25 ]. Furthermore, trust is a multifaceted concept [ 26 , 27 ], which is why the subjects of trust were split into medical information sources and other advertisement channels. Hence, it is not unexpected that trust in medical information sources is not associated with SMA.

The rejection of H5b (data privacy) was more surprising, particularly because the qualitative interviews indicated strong connections between data privacy and SMA. In addition, the scholarly debate around data privacy issues has been very salient: data ethicists have repeatedly emphasized the issues related to data privacy and transparency in the context of social media use in the research context [ 12 , 28 , 29 ]. In addition, the European General Data Protection Regulation emphasizes the transparent use of data and the rights of data subjects [ 30 ]. Moreover, various scandals (eg, related to the US presidential election in 2016 and the UK Brexit referendum) diminished users’ trust in social media platforms and increased awareness of data privacy in that context [ 31 , 32 ]. A recent population survey conducted in Germany, the United Kingdom, and the United States confirmed high levels of concern regarding data privacy in all included countries [ 33 ]. Given these public discussions about social media activities being problematic for data privacy, it is particularly astonishing that data privacy concerns (as operationalized in our study) were not predicting SMA. The findings align with discussions around the privacy paradox. It was confirmed in numerous studies that social media users display limited data protection behavior despite being concerned about their privacy [ 34 - 36 ]. In line with this, the aforementioned scandals have not resulted in a decline in Facebook users [ 37 , 38 ]. Other studies suggest a poor user awareness of online privacy [ 39 ] and fatigue in engaging with privacy-related risks [ 40 ]. It seems that the surveyed population with hepatitis B in Germany are also affected by this privacy paradox.

The rejection of H6 (association of stigma) was surprising, too, particularly because of the strong association between hepatitis B and stigma in other studies. An Indian survey study found that most surveyed patients with hepatitis B were subject to severe stigma and moderate to severe discrimination, with gender identification as men, unemployment, and illiteracy being predictors of discrimination [ 6 ]. Other survey studies from Australia, Turkey, and Serbia confirmed the presence of self-reported perception of stigma in 35% to 47% of patients with hepatitis B and 60% to 65% of patients with hepatitis C [ 10 , 41 , 42 ]. An Iranian qualitative study found that patients with hepatitis B conceptualized stigma as both extrinsic (eg, discrimination, public embarrassment, or blame) and intrinsic (eg, perceived rejection, social isolation, and frustration) [ 8 ]. Although this empirical evidence illustrates the relative importance of stigma in the context of hepatitis B, this did not predict patients’ acceptance of social media recruitment in our study. Instead, our findings suggest that the perceived secrecy of a hepatitis B diagnosis, which seems to be unrelated to the perception of stigma, is informative on social media recruitment acceptance. This indicates that perceptions of stigma in other stigmatized diseases (eg, sexually transmitted diseases, and psychiatric disorders) might not influence patient acceptance to be recruited via social media for clinical studies. However, empirical studies within these populations need to confirm this.

Limitations and Further Research

Our survey showed a relatively balanced representation of genders. This aligns with a German serological study from 2011, which indicated no statistically significant difference in the prevalence of acute or chronic hepatitis B infection in men and women [ 43 ]. In terms of age distribution, the survey study covered a diverse range of age groups, mirroring the distribution found in the German serological study [ 43 ]. On the basis of these observations, the survey sample overall is representative of the population with hepatitis B in Germany regarding gender and age.

However, it is essential to consider potential limitations and sources of bias. The recruitment strategy used, primarily relying on venue-based recruitment within a clinical setting, might introduce selection bias, as it may not fully capture the diverse population that may exist outside such settings. In addition, only 30.4% (285/939) of estimated incoming patients received the questionnaire, which might introduce an additional selection bias. We attempted to mitigate this by explicitly briefing the study nurses to avoid self-selection when distributing the survey. The low distribution rate has been mainly caused by administrative burden, resulting in weeks during which no questionnaires were distributed. Thus, we do not expect this to have a large impact on selection bias.

In addition, the study’s restriction to the German language may have impaired the accessibility of the questionnaire for participants who do not have German as their mother tongue. In addition, the exclusive focus on a German setting may limit the generalizability of the findings to a broader international context, potentially impacting the study’s external validity. Finally, it is important to note that we have shortened the questionnaire in comparison to its original length after discussion with clinical colleagues, who provided the feedback that the questionnaire was too long. As part of this shortening, some validated scales were replaced by self-developed scales, which may have implications for the comprehensiveness and depth of the data collected.

Consequently, the attitudes of patients in other medical conditions toward social media recruitment, and a comparison to the attitudes of patients with hepatitis B assessed in this study, should be subject to further research. Similarly, it will be important to study how the different social media platforms, their underlying logic, use patterns, and other factors might influence patients’ acceptance of social media recruitment over time.

Conclusions

This study provides the first quantitative data on the acceptance of social media as a recruitment channel for clinical studies. In the context of hepatitis B in Germany, acceptance of being recruited via social media was very limited. More than 1 (28.7%) in 4 participants rejected this recruitment channel. The study sets out to be a reference point for future studies assessing the attitudes and acceptance of social media recruitment for clinical studies. Such empirical inquiries can facilitate the work of researchers designing clinical studies as well as ethics review boards in balancing the risks and benefits of social media recruitment in a context-specific manner. Moreover, this study provides guidance for researchers considering using social media recruitment and ethics review boards judging such undertakings, by cautioning against the potentially low acceptance rates social media–based recruitment might yield for some patient populations. These should be weighed against the risks of social media recruitment for the target populations.

Similarly relevant for practice, the findings indicate that social media recruitment is particularly accepted in patient populations with high interest in participating in clinical studies. This is particularly the case for diseases with insufficient treatment options and historically neglected diseases with high unmet needs [ 44 ]. Using social media as a recruitment channel for studies targeting these patient groups might thus encounter higher acceptance levels than in this study. There was no statistically significant role associated with perceived stigma and data privacy needs among patients, suggesting that these concerns are unrelated to social media recruitment acceptance.

Acknowledgments

This study received funding from the European Union’s Horizon 2020 research and innovation program (848223; TherVacB). This publication reflects only the authors’ views, and the European Commission is not liable for any use that may be made of the information contained therein. The authors would like to thank all TherVacB clinical project partners who helped recruit for this study and provided feedback on the questionnaire for their kind collaboration. The authors would also like to thank all patients with hepatitis B who took the time to participate in the survey.

Conflicts of Interest

None declared.

Response rate information.

Questionnaire.

Assumptions checks for regression analyses.

Description of each item of the questionnaire.

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Abbreviations

social media acceptance

Edited by A Mavragani; submitted 27.10.23; peer-reviewed by D Kukadiya, WB Lee; comments to author 26.02.24; revised version received 08.03.24; accepted 03.06.24; published 26.08.24.

©Theresa Willem, Bettina M Zimmermann, Nina Matthes, Michael Rost, Alena Buyx. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 26.08.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research (ISSN 1438-8871), is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

Open access
Published: 29 August 2024

Facilitators and barriers to initiating and completing tuberculosis preventive treatment among children and adolescents living with HIV in Uganda: a qualitative study of adolescents, caretakers and health workers

Pauline Mary Amuge 1 ,
Denis Ndekezi 2 ,
Moses Mugerwa 1 ,
Dickson Bbuye 1 ,
Diana Antonia Rutebarika 3 ,
Lubega Kizza 4 ,
Christine Namugwanya 1 ,
Angella Baita 1 ,
Peter James Elyanu 1 ,
Patricia Nahirya Ntege 1 ,
Dithan Kiragga 1 ,
Carol Birungi 4 ,
Adeodata Rukyalekere Kekitiinwa 1 ,
Agnes Kiragga 5 ,
Moorine Peninah Sekadde 6 ,
Nicole-Austin Salazar 7 ,
Anna Maria Mandalakas 8 &
Philippa Musoke 9

AIDS Research and Therapy volume 21 , Article number: 59 ( 2024 ) Cite this article

Metrics details

Introduction

People living with HIV (PLHIV) have a 20-fold risk of tuberculosis (TB) disease compared to HIV-negative people. In 2021, the uptake of TB preventive treatment among the children and adolescents living with HIV at the Baylor-Uganda HIV clinic was 45%, which was below the national target of 90%. Minimal evidence documents the enablers and barriers to TB preventive treatment (TPT) initiation and completion among children and adolescents living with HIV(CALHIV). We explored the facilitators and barriers to TPT initiation and completion among CALHIV among adolescents aged 10-19years and caretakers of children below 18years.

We conducted a qualitative study from February 2022 to March 2023, at three paediatric and adolescent HIV treatment centers in Uganda. In-depth interviews were conducted at TPT initiation and after completion for purposively selected health workers, adolescents aged 10–19 years living with HIV, and caretakers of children aged below 18years.

The desire to avoid TB disease, previous TB treatment, encouragement from family members, and ministry of health policies emerged as key facilitators for the children and adolescents to initiate TPT. Barriers to TPT initiation included; TB and HIV-related stigma, busy carer and adolescent work schedules, reduced social support from parents and family, history of drug side effects, high pill burden and fatigue, and perception of not being ill. TPT completion was enabled by combined TPT and ART refill visits, delivery of ART and TPT within the community, and continuous education and counseling from health workers. Reported barriers to TPT completion included TB and HIV-related stigma, long waiting time. Non-disclosure of HIV status by caretakers to CALHIV and fear of side effects was cited by health workers as a barrier to starting TPT. Facilitators of TPT initiation and completion reported by healthcare workers included patient and caretaker health education, counselling about benefits of TPT and risk of TB disease, having same appointment for TPT and ART refill to reduce patient waiting time, adolescent-friendly services, and appointment reminder phone calls.

The facilitators and barriers of TPT initiation and completion among CALHIV span from individual, to health system and structural factors. Health education about benefits of TPT and risk of TB, social support, adolescent-friendly services, and joint appointments for TPT and ART refill are major facilitators of TPT initiation and completion among CALHIV in Uganda.

Globally, 10.6 million people fell ill with tuberculosis (TB) in 2022, of which 12% were children below 15 years of age, and 23% reported in Africa [ 1 ]. People living with HIV (PLHIV) accounted for a disproportionate 6.7% of the TB cases and TB-HIV co-infection rates greater than 50% persist in numerous countries [ 1 ]. Out of the 1.6 million TB related deaths that occurred in 2021, 187,000 were among PLHIV, with 11% among children living with HIV [ 1 ].

Following TB exposure, PLHIV have a 20-fold increased life-time risk of progressing to TB disease, and up to 15% annual risk of TB disease, compared to the general population [ 2 ]. There is evidence that TB preventive treatment (TPT) in combination with anti-retroviral therapy (ART), reduces the risk of TB disease by up to 90% [ 3 , 4 ]. During the period 2018–2021, 10.6 million PLHIV received TPT globally, which was more than the targeted 6 million PLHIV. Nevertheless, there is minimal global data reporting TPT completion rates.

Uganda is one of the 30 countries categorized as high TB and TB/HIV burden by the World Health Organization (WHO) [ 1 ], with 74,799 TB patients reported in 2022, of which 32% were HIV-co-infected, and 12% were children below 15years of age [ 1 ]. Following three nation-wide TPT uptake campaigns led by the Ugandan ministry of health, 88.8% of the eligible PLHIV received TPT [ 5 ]. In Ugandan public health facilities, only 17% PLHIV initiated TPT out of the 93% who were eligible for TPT, with only 58% completing the full TPT course [ 6 ]. Some of the documented challenges contributing to such gaps in TPT uptake among PLHIV include; hesitancy of health workers to prescribe TPT for fear of promoting drug resistance, interrupted TPT supply, patients’ fear of additional pill burden and side-effects [ 6 ]. Non-completion of TPT was also associated with ART non-adherence, ART regime switch, and patient representation among adult PLHIV in rural Uganda [ 7 ]. Effective implementation of TPT, through addressing identified barriers and enhancing the facilitators of TPT [ 8 ], is key in reducing the burden of TB disease among PLHIV and bridging the TPT uptake and completion gaps [ 9 , 10 , 11 ]. However, there is limited data on TPT completion especially among PLHIV who are concurrently on ART. Therefore, it is important to understand the multi-faceted barriers and facilitators of initiating and completing TPT among the PLHIV. These may be related to the different healthcare system components such as; the clients or community, health policies, leadership and governance, drugs and logistics management, clinical information systems, service delivery, health workforce and financing [ 12 ]. Individual factors reported to facilitate TPT uptake and delivery among PLHIV in Tanzania include; alignment of ART and TPT visits, and TPT-related education and counseling. In South Africa, individual facilitators of TPT completion among PLHIV included; knowledge about TB and TPT, acceptance of one’s HIV status, having social support in the community and at the health facility, and desire for health preservation [ 13 ]. Individual barriers to TPT uptake and delivery included; perceived or previous experience of side effects, HIV stigma, pill burden, negative cultural and religious values, misunderstanding of TPT’s preventive role, financial burden of transport to the clinic and lost wages, and ineffective communication with the health workers [ 13 , 14 , 15 ].

Health care worker facilitators of TPT initiation among PLHIV include; comprehensive and collective planning, and supervision, presence of guidelines, TB-HIV training, positive attitude and being knowledgeable about TPT, known benefit of TPT, and effective health worker communication [ 8 , 13 , 16 ]. Health care worker and health system barriers to TPT delivery and uptake include; fear for isoniazid resistance due to interrupted drug supply, poor knowledge and attitude, misunderstanding about timing of TPT initiation, shortage of skilled health workers, variable TB screening practices and responsibilities, drug shortage [ 10 ], and contradicting guidelines from TB programs and HIV care programs [ 14 , 17 , 18 , 19 ]. In South Africa, lack of fidelity to national TPT guidelines was a barrier among health workers to initiation of TPT for PLHIV [ 20 ]. Absence of parental risk perception was reported as a barrier to TPT uptake among children in TB endemic areas [ 21 ]. Most of the documented facilitators and barriers to TPT initiation and completion are among adults, with limited reports for children, adolescents and their care takers.

Therefore, we conducted a qualitative study to explore the perceived and experienced barriers and facilitators to TPT initiation and completion among Ugandan children and adolescents living with HIV (CALHIV).

Theoretical orientation

A growing body of literature illustrates that health outcomes are progressively influenced by the environments within which individuals thrive and less by individual behaviors [ 22 ]. We therefore adopted the social ecological model (SEM) as a theoretical framework for analysis (see Fig. 1 below). The social-ecological model (SEM) of health promotion by McLeroy and colleagues states that health behaviour and promotion are interrelated and occur around multiple levels in the individual, interpersonal, institutional, community, and policy levels [ 23 ] This multifaceted perspective is important to understand and explicate barriers and facilitators of TPT initiation and completion among children and adolescents living with HIV, caregivers, and health care workers. The first level refers to individual factors that facilitate or inhibit a person’s choices, including personal stigma, limited knowledge about the prevention treatment, financial constraints and drug characteristics. The second level is interpersonal or network influences. An individual’s relationship with their closest caretakers, and family members influences their uptake and completion of preventative treatments. The third level is community perspectives, as children, caregivers and health care workers are influenced by community-held mass awareness campaigns community drug delivery services and community misconception about prevention treatments. The fourth level refers to health system (institutional) influences, including busy, unapproachable health care workers, limited access to the right treatment and the long waits. The final level refers to structural influences including the accessibility of the information and services related to TB.

Illustration of the SEM framework showing the interrelations at various levels

Study design and data collection methods

This qualitative study was part of a prospective cohort study conducted from February 2022 to March 2023; where CALHIV and their care takers were offered to choose either facility-based or community-based initiation and delivery of TPT. This was part of the differentiated TPT delivery among CALHIV in Uganda (COMBAT TB study).

Study setting

The study was conducted at three high-volume paediatric and adolescent HIV treatment clinics; Baylor College of Medicine Children’s Foundation-Uganda (Baylor-Uganda) center of excellence (COE) HIV clinic located in Mulago Hospital Kampala, Joint Clinical Research Center (JCRC) located in Lubowa, and the Makerere Joint AIDS Program (MJAP) ISS Clinic located on Mulago Hill in Kampala. The Baylor-Uganda clinic located about 4 km from the Kampala city center, provides comprehensive HIV care services for more than 4000 CALHIV out of more than 8000 PLHIV in care at the clinic. The JCRC Lubowa HIV clinic located in Wakiso district, 11 km from Kampala, and it provides comprehensive HIV care services to 1300 CALHIV out of 15,000 PLHIV in care. The MJAP ISS clinic located on Mulago Hill in Kampala, provides comprehensive HIV care services to 612 adolescents out of over 17,000 PLHIV in care. The three clinics run from Monday to Friday as one-stop-centers for care and research on HIV, TB and other HIV-related conditions. The HIV and TB care is provided by multi-disciplinary teams which include counselors, community health workers, peer educators, nurses, pharmacy staff, doctors and laboratory staff. The clients receive HIV prevention services, ART, TB preventive treatment and TB treatment. There is also screening and treatment of other opportunistic infections and non-communicable conditions like mental health issues, hypertension, and diabetes. The services are provided at the health facilities or within the community, based on the national HIV and TB treatment and prevention guidelines.

The CALHIV were screened for TB using the WHO-recommended TB symptom screening tool at every clinic visit. Individuals with TB symptoms completed a clinical evaluation, and TB diagnostic tests, such as Xpert MTB/RIF ultra, urine TB lipoarabinomannan (TB-LAM) for those with CD4 count < 200cells/ul, and chest X-ray. Patients diagnosed with TB then start TB treatment.

Individuals who were assessed as not having TB were considered eligible for TPT, such as; PLHIV above one year of age with no evidence of TB disease, PLHIV who are close contacts of TB patients, and PLHIV who have recently completed a full course of TB treatment. The ministry of health supplied the study sites with TPT drugs; initially isoniazid taken daily for six (6) months, and later rolled-out once weekly isoniazid and rifapentine for three months. The TPT is dispensed with pyridoxine, to prevent peripheral neuropathy, a common side-effect of isoniazid. Individuals who developed mild or moderate side effects, were usually advised to continue with the TPT while the side-effects were managed. If any individuals developed severe side effects, the TPT was withheld to first manage the side effects.

Individuals who initiated TPT within the differentiated delivery approach, had follow-up done via phone calls at two weeks and four weeks after TPT initiation. Follow-up was done at 3months after TPT initiation, and thereafter every three-months at the clinic or within the community to identify and manage side-effects, screen for TB symptoms, and assess adherence to the TPT and ART.

TB screening and diagnostic tests were done for participants with TB symptoms after starting TPT. Participants diagnosed with TB disease before completion of their full TPT course had their TPT stopped and TB treatment started. Adolescents living with HIV were eligible for the study if they were aged 10–19 years, initiating TPT, and completed or did not complete the full dose of TPT. Care takers were eligible for the study if their children aged < 18years living with HIV were initiating TPT, completed or did not complete the full dose of TPT and were willing to provide written informed consent. Health care workers were eligible if they were actively involved in providing TPT and willing to provide written informed consent.

Purposive sampling was done to select eligible health workers, adolescents aged 10-19years and parents or care takers of children who were eligible to start TPT.

During selection of adolescents and care takers, selection was done to try and achieve representation from; the three clinics, with almost equal numbers of; males and females, and age categories (10-14years, 15-19years), TPT completion status (completed, did not complete, missed doses or lost to follow-up), facility-based or community-based delivery models, and ART status (initiating ART or ART-experienced).

The health care workers in this study were involved in screening the children and adolescents for TB, assessing TPT eligibility, prescribing TPT, monitoring individuals on TPT, and providing TB-HIV counseling and guidance according to the national TB and leprosy control guidelines (24). Among the health workers, efforts were made to select equal numbers of males and females, and fair representation by different cadres (nurses, clinical officers, doctors, pharmacists).

Data collection procedure

A semi-structured interview guide was used for each category to obtain in-depth descriptions and valuable insights about the barriers and facilitators to TPT initiation and completion from the three categories of participants.

During the TPT initiation visits, qualitative in-depth interviews (IDIs) were conducted face to-face by an experienced male social scientist (DN), using the piloted interview guide for the data collection process. Interviews lasted between 30 and 45 min. Field notes were also made after each data collection session. Participants were recruited through purposive sampling with the help of the study nurse (CN) at three HIV clinics between June 2022 and August 2023. The IDIs were carried out with the CALHIV, Caretakers/parents and health workers. All the IDIs were held in a conducive place that was safe, neutral and with minimal distractions for the participants and the researcher. This place was either suggested by the interviewee or preset by the interviewer at the participating HIV clinics. Data collection was conducted in a language preferred by the participant, either English or Luganda. The interviewer (DN) took time at the outset of the discussions to develop a rapport with participants, acknowledging the sensitivity of the topic and creating a safe space for them to share their thoughts and experiences. Participants were fully informed about the purpose and objectives of the study, and they provided their informed consent to participate, indicating their understanding and agreement with the research goals and procedures. Approximately four months into the TPT study, participants were approached to participate in the second phase of IDIs for TPT completion.

Sample size

During TPT initiation, thirty (30) IDIs were carried out with the caretakers/parents and children ( N = 30; 10 health workers, 10 CALHIV, and 10 Caretakers/parents). After TPT completion, interviews were conducted with 10 care takers, and 10 CALHIV. Participants were purposively sampled to represent those CALHIV who completed and those who did not complete or defaulted their TPT dose. The interview guide explored both the facilitators and the barriers for the TPT initiation and completion.

Data management and analysis

In-depth interviews were audio recorded, transcribed verbatim, and then translated into English for a hybrid approach of inductive and deductive thematic analysis [ 22 ] by two researchers (DN and PMA) experienced in qualitative methodology. The initial deductive coding was based on the five levels of the Social Ecological Model (SEM) in Fig. 1 above, and inductive coding was used to explore other themes that were not covered by the SEM. Three transcripts were initially selected and read through for familiarization and coded manually by DN. To ensure coding consistency, the developed codes were shared with the study principal investigator PMA to facilitate collaborative thematic analyses throughout [ 23 ]. All transcripts were imported into NVivo 14 and coded using the refined codebook by DN and PMA. The transcripts were not returned to the participants. The data was organized into pre-defined key themes outlined by the levels of the SEM. A framework approach using SEM was used for data analysis [ 25 ]. Themes and sub-themes were continually reviewed and refined to capture emerging new codes. Quotes were captured to highlight thematic areas and increase our understanding of the context. The methods and results were aligned to the consolidated criteria for reporting qualitative research (CORE-Q) [ 26 ].

A total of 50 IDIs were conducted for the selected participants (health workers ( N = 10), adolescents ( N = 10), care takers ( n = 10) until saturation of content was achieved. Table 1 below summarises the demographic characteristics of the study participants.

Facilitators to initiation and completion of TPT among adolescents and children

From the IDIs, we found the following facilitators at individual level. Participants perceiving themselves as being at risk of contracting TB was a key facilitator to initiate and complete TPT. In addition, some care takers highlighted that the TPT will also help the child to have a good life without TB, but if she acquires TB and yet is already HIV positive, the child may be severally affected.

“Apart from the fact that it will help me to prevent TB, it will help me not to get TB and am assured that I will not get TB because TB is very risky, inconvenient and I will protect others because I know I am at a very high risk. So by taking the drugs, at least I know am protecting someone in case I get it, am protecting a family member, a sibling, a sister”. Male Adolescent 15 years.

Further analysis revealed that care takers and participants who were once diagnosed with TB and recovered narrated their agony and the experience of treating TB which they noted that they would not want to experience again. The experience they had with TB disease compelled them to initiate and complete their TPT dose.

“Another reason why I accepted my child to start on TPT is because my child has ever suffered from TB, and given that now we have the drugs for preventing it, I had no reason to resist it. I was afraid the child might acquire it again”. Female carer of 10-year-old adolescent.

The desire to remain free from TB emerged as a facilitator to initiating and completing TPT. The TPT was perceived as a breakthrough strategy to prevent acquisition of TB.

“Since I had an experience of a person with TB that I told you about, I didn’t want to wait until he is affected as it did to the other one I saw. So that forced me to ensure that the dose is completed”. Female caretaker of 14-year-old adolescent.

At the interpersonal level, support, care and encouragement from family, supervision from the caretakers also emerged as important facilitators to initiate and complete TPT. The participants remarked that receiving care and support (reminders) from immediate family encouraged them to complete their treatment.

“Like at home, there is my mother who always reminds me to take my drugs. That helped me to always take my drugs in time”. Female Adolescent, 18 years.

Community level facilitators included guidance and counseling, comprehensive information, mass awareness and sensitization about TPT. Participants mentioned that receiving adequate information and sensitization was helpful for their decision to initiate TPT. Participants reported that they received information from the health workers on how the child should take the medicine and how the treatment works to prevent the disease, something that encouraged most of them to start their children on treatment.

“The encouragement I got from doctors helped me to give treatment to my child for TB treatment which also made it easy for me to start him on TPT. I believe by the time the dose is completed the child will be okay. Doctors also sensitized us about the possible side effects of the drugs and they follow up with phone calls”. Female care taker for a 7-year old child.

It emerged that information about the TPT made available by the health workers, with opportunities to discuss the treatment with the doctors, and making it known in the community, enabled the care givers to allow TPT to be given to their children and adolescents.

“When people are aware, it makes the services easy to access. Many people talk about other things on TVs and radios but they don’t take about TB. We have to tell people TB is real and a killer disease. You can also inform them in case someone sees the symptoms they should be screened for TB”. Medical doctor 01.

At the institutional and organizational level, participants preferred to have convenient services as a facilitator for the initiation and completion of the treatment. This was in terms of having TPT appointments scheduled on the same days of ART refill so that they can have all the drugs on the same appointment as this will reduce the time spent at the clinic and cost of repeat visits.

“The other issue is integrating those TPT refills with their usual clinic visits and community services so that they can readily receive the drugs at times without even wasting much time and transport to come to the clinic”. Medical doctor 02.

Among the healthcare providers, it emerged that many young people preferred to have the drugs taken to them so that they don’t have any excuses of not coming to the clinic for treatment.

“Also initiating TPT delivery models that reduce the transport costs and avoid missing clinical appointments and doses. Also to make sure their drugs are delivered before they are out of stock”. Nursing officer 01.

Besides the convenient services, health workers recognized mechanisms of following up the patients initiated on TPT or reminding them when to take their treatment as facilitator for the completion of TPT.

“We need to make mechanisms of follow ups when you put someone on TPT, you have to check on them to see how they are doing sometimes when you tell them to take the drug on Sunday it means they will even shift the ARVs to the same date”. Epidemiologist 01.

Health workers also cited frequent and friendly communication with children and caretakers in terms of the health talks at the clinic, calling the patients through the mobile phones and receive their feedback.

“Another thing is when you relate with children they bring out their challenges where you share and help them out. Smoothly they can cooperate and complete the six months’ TB preventive treatment". Study counsellor 01. “With the care takers, it is just a matter of explaining to them. It will not be hard for them if they have understood the importance of TPT and even the challenges will be less. The information should be explained in a way which is understood.” TB community linkage facilitator 01.

At the structural level, what emerged was having national policies and good performance indicators at the health facilities that are developed to create demand for the TPT among CALHIV has a great advantage and facilitates TPT uptake.

“Demand creation, tasking health workers. We have our weekly performance review and TPT is among the many indicators we track. Ministry of health asks us how many people are on TPT which helps the health worker to improve on performance and this will facilitate the uptake of TPT”. Medical officer 01.

Regular auditing and identifying the challenges and weaknesses at the facilitate level in relation to the prescription of the treatment emerged as a key facilitator for the uptake of TPT among CALHIV.

“We have reached that level where we appreciate if you find your health workers are not performing well, sit down as a unit and ask yourself on the weaknesses. If you planned to start 56 participants on TPT this week what happened, open the file and do file audits. You will discover interesting things other than patients missed to come or ask the pharmacist why were you not prescribing the drugs when there was even an alert”. Epidemiologist 02.

The following themes emerged as barriers to TPT initiation and completion at patient-level, structural, community and interpersonal levels.

We found the following individual-level barriers to TPT initiation and completion. One of the emerging barriers to initiate or complete their TPT was the stigma associated with taking TB or HIV drugs. The fear of being seen taking many pills on a daily basis was cited as affecting their emotional well-being and mental health.

“Stigma will always be there and I think it’s a reason why so many kids out there fear. Personally before, I didn’t have any problem taking my medicine. So when the stigma started I stopped taking medicine, I stopped caring, it really caused me a lot of mental damage and trauma”. Male Adolescent 18 years.

Where there is limited privacy, taking the treatment would be difficult. Participants also mentioned that they would fail to come for their HIV clinic appointments, for fear of being identified as HIV patients or TB patients.

“…the main challenge is the stigma of HIV which is a leading factor in the community. Some of them fail to come for their appointments because of stigma. They don’t want to be identified as HIV or TB-positive”. Medical officer 03.

The fear of drug-related side effects was reported as a key barrier to starting TPT. Participants expressed their fear of taking TPT treatment for fear of side effects based on their past experiences with different drugs. At TPT completion, experience of side-effects like dizziness and nausea emerged as barriers to TPT completion.

“It would make me feel nausea or feel like vomiting, headache and dizziness. Me I decided not to take them anymore… I even didn’t tell anyone”. Male adolescent, 12 years old.

High pill burden coupled with poor drug adherence also emerged as key barriers reported by the participants, especially if the child was also on ART regimens.

“Another issue is about the pill burden because these are people who are already on ARVs and then they are added more pills for TB so it becomes a lot for them”. Nursing officer 3. “The biggest barrier is adherence because it’s still a challenge to even those that are HIV negative. There are clients who are not used to taking treatment and if the treatment is for six months there will be a challenge of commitment to take the drugs every day.” Medical officer 03.

Among the caretakers, it emerged that pill fatigue created by taking tablets when a person is not sick with TB, caused many adolescents to miss their doses and some did not complete, even though they reported taking the drugs when it is not true.

“Some children fear taking drugs and time comes when the child is tired and no longer wants to take the medicine. … the child can pretend to be taking the medicine when it is not true because the child got tired of taking the drugs”. Female Caretaker of 8-year-old child. “That the medicine was a lot, and the child got tired of it, so she didn’t complete. “Sometimes she could say, “it is just for prevention, I will not take it”. The fact that the child didn’t have TB, she could not care at all”. Female caretaker of 15 years adolescent.

Caretakers expressed the discomfort of children taking pills with a bad smell, big size, unpleasant color and poorly packaged. Participants said that a pill with no smell, small size and attractive packaging would be easier to swallow.

“One, the smell of the medication might not be really good to the child, the pill size can be too big, you even see and say ooh! Female caretaker to 13-year-old adolescent.

It emerged that some adolescents and their caretakers are “ engaged in demanding jobs that may not allow time to collect their medication or they may forget to take it ”. Community Health linkage officer 01.

Forgetting to take the additional drugs also emerged as hinderance to complete the TPT.

“…when you work a lot and do not get time, because you are not used to it like ARVs, the busy schedule can also cause you from not taking the drugs. Male adolescent-18 years. “She is so forgetful. You always have to ask her whether she has taken the medicine. If you are not around, I just know she has not taken and that’s why she didn’t complete”. Female caretaker to a 16year-old adolescent.

At the interpersonal level, the change of caretakers and lack of support mainly from parents also emerged as key barriers to the completion of TPT.

“Some of them like children depend on their caretakers and sometimes we experience changes of the caretakers”. Nursing officer 04.

Among female caregivers, denial or restrictions by the husbands to come to the clinic for refills, also emerged as a barrier for TPT completion among their children

“For those that are married, their husbands don’t allow them to come to the clinic since it was not on the program”. Female caretaker 14 years child.

Financial constraints and lack of food contributed to delay in TPT initiation and failure to complete the treatment. Caretakers expressed concerns that certain medications require a specific diet to be effective, but they struggled to provide the necessary nutritional support, particularly for their school-aged children, which in turn impacted their ability to adhere to treatment regimens, as highlighted by one adolescent’s experience

“Ok the major challenge I faced at school is sometimes I don’t take medicine because I have not eaten. I know the medicine is very strong and I know it will affect my stomach. It will affect me so if am to take it on an empty stomach it wouldn’t be possible. So sometimes I just don’t take it because I know it will cause me effects”. Female Adolescent 18 years.

Failure of the caretakers to disclose HIV status to the children was cited as a barrier of children to initiate and take TPT treatment. One health worker noted that most mothers at home have never disclosed the reason why their children take these drugs daily, and when the husband is around they cannot take their drugs.

“There is also no disclosure especially to the children. So you find when the child doesn’t take the drugs because they do not understand why they are taking the drugs”. Medical doctor 04.

This has also been a challenge to trace TB contacts in families where the patient has never disclosed to the family members and as a result, children in these families miss the opportunity to take the TPT treatment.

“Disclosure is the problem when families have not yet disclosed, and someone comes down with TB. It is difficult to conduct contact tracing, for example on what ground are you asking the family about TB. So it is hard”. Epidemiologist 02.

At the community level, misconception about TPT and Community stigma associated to TB were some of the barriers identified. Further analysis revealed that some adolescents are so inquisitive about drugs and the intended benefit of taking the drugs. However, many are confused with the different sources of information about the benefits of the drugs. In addition, they did not understand how it could work to prevent infection. For example, there was a misconception about the dangers of taking medication when you are well. Some perceived that the government would introduce these treatments as a gateway to reducing their life span.

“Adolescents are very inquisitive. They keep questioning depending on the different sources of information they receive. So some of the questions are like, “don’t you think these are the drugs that stimulate our TB?” Most of them have those questions and I don’t know whether it’s propaganda now they keep saying “the government or the health facilities are trying to make us fall sick quickly and we even google some of these drugs kill the cells that could have protected our bodies”. This affects their TPT drug adherence”. Medical officer 02.

Participants also reported that there was stigma related to TB disease at health facilities and in the communities where patients reside. The situation worsens especially for adolescents in schools where students fail to take their medication until their next appointment because of the stigma from their fellow peers.

“Students may stigmatize you, which at times makes you not to take the drugs or hide it from them that you are not taking the drugs”. Female adolescent 18 years. “Yes, because they disturb you, they say that one is a TB patient, and they talk a lot. This caused me to miss the refill days”. Female adolescent 14 years.

At the institution level, the long waiting-time at the clinic emerged as a barrier to completing TPT. Participants revealed that they preferred quick access to services without having to spend long hours in queues waiting to receive the treatment.

“It’s just embarrassing, it’s just too much. The long waiting really makes me feel like opting out. That’s the truth I can tell you”. Female care takers to a 13-year-old adolescent. “I come early and leave late. That issue made it hard for me. Sometimes I tell her to go by herself but then I remember that she will not give in her complaints. Sometimes we missed coming”. Female caretaker to a 12-year-old adolescent.

Participants were concerned about the attitude of health workers when they are seeking services. This was viewed as a major barrier because they thought if the health workers are rude to the clients, they might not find it conducive to collect their treatment. This was echoed by some health workers who shared the experience that when patients are mistreated, they fail to come back until they are followed up.

“You may find when the person has failed to come on a clinic visit because he was mistreated by a nurse and has not been listened to. Then the person concludes by saying I will not come back”. When it comes to the next appointment, they don’t come back”. Medical officer 05.

Health care workers forgetting to prescribe the drugs at refill visits emerged as one of the barriers to TPT completion.

“Also to the prescribers, someone might have taken TPT like for three months and when they report back, the prescriber forgets to give the refill to add up the six months. So, a patient ends up missing the three months and restart the treatment again”. Medical officer 01.

Health care workers also commented that health facilities may lack essential medicines, and clients are advised to buy from private pharmacies which hinders completion.

At the structural level, participants reported that if the clinic was not within easy reach, they found it a problem to pick their drug refills. This required them to travel long distances with costly transport.

“Transport also affects us, there is a time when you have to come and get treatment but when you don’t have money and that’s why some people fail to come”. Female care giver to 12-year-old adolescent.

This qualitative study explored the perceived, and experienced facilitators, and barriers to TPT initiation and completion among children and adolescents living with HIV, as reported by the Ugandan health workers, adolescents, and care takers of children.

Parental support and supervision, perceived risk of TB disease, and previous experiences of TB treatment were reported by adolescents and care takers of children as the major facilitators of TPT initiation and completion. Similar to a Kenyan study by S. Ngugi et al. [ 15 ], this study found that provision of adequate information about TPT benefits and dosing by health workers, family and community support, and experience of treating children with TB were highlighted by care takers as facilitators that enabled their children to initiate and complete TPT. Social support is very key in determining TPT initiation and completion among CALHIV, calling for integration of psychosocial support in TPT programs.

Facilitators of TPT initiation and completion highlight the need to provide adolescent friendly services and integrated TB and HIV services to facilitate initiation and completion of TPT among adolescents living with HIV [ 8 ]. Adolescent friendly services should be accessible, acceptable, appropriate and delivered in safe and respectful environment by supportive healthcare providers (27, 28). These include promotive, preventive, curative, and referral health services (28).

The barriers to TPT initiation and completion reported by adolescents included; TB or HIV-related stigma, busy work schedules of the adolescents and care takers, reduced social support from parents and family, previous experience of side effects from other drugs, pill burden and fatigue when that are not sick, financial constraints to travel to the clinic, and lack of food to take with the medicines. The roll-out of shorter TPT regimens is very timely [ 9 ], and will most likely address concerns of pill burden and fatigue among CALHIV who are already receiving daily ART.

Although care takers identified barriers to TPT initiation and completion that were similar to those reported by the adolescents, care takers additionally reported barriers such as; pill size, burden and odour, misconception and misinformation about the benefits and duration of the TPT, long distances to the health facilities, and rude health workers. It is important to provide regular adherence support from TPT initiation to facilitate completion, and therefore the efficacious benefits of TPT.

In contrast to the study by Teklay G et al. [ 18 ], health workers did not report fear of creating isoniazid resistance as a barrier to TPT initiation among CALHIV. Barriers cited by health workers included; TB and HIV-related stigma, undisclosed HIV status to the CALHIV, misconceptions that TPT puts their life at risk, fear of side effects, missed opportunities due to forgetting by health workers, poor attitude of health workers towards the adolescents, long waiting hours, change of care takers, and lack of parental or social support. These are closely related to the contextual barriers reported by Nyarubamba R. F et al. in Tanzania [ 14 ], and Lai J et al. in Ethiopia [ 16 ]. Drug stock outs in some facilities were reported as barriers, similar to a study among health workers in Ethiopia [ 18 ].

Limitations

The purposively selected sample is not widely representative of the CALHIV and their care takers in high TB burden countries. Therefore, transferability of these results in other settings may vary based on; the social-ecological models used to assess patient perceptions, TB disease burden, patient/family education and support initiatives within the healthcare system. There were limited numbers of participants who did not complete TPT, limiting the depth of lived experiences about barriers to TPT completion among CALHIV. This study did not explore the perspectives of policy makers in TB care, as these are also important to guide concerted efforts to improve TPT uptake and completion among CALHIV. There was no quantitative data for triangulation with the qualitative results.

The in-depth interviews were conducted at TPT initiation and after TPT completion. This minimised recall bias. This enabled deeper understanding of both perceived and experienced facilitators and barriers to TPT initiation and completion among CALHIV.

The facilitators and barriers of TPT initiation and completion among CALHIV are diverse, spanning from individual factors to healthcare system and structural factors. Educating patients about the benefits of TPT and the need to reduce the risk of TB, facilitates TPT initiation and completion among CALHIV. Availability of social support, adolescent-friendly services, and integration of TPT refills into ART refill visits are also major facilitators of TPT initiation and completion among CALHIV.

TB and HIV-related stigma, high pill burden of TPT in addition to ART, non-disclosure of HIV status of the children and adolescents, lack of parental support, transport difficulties, and misconceptions about TPT side effects, were the major barriers to initiation and completion among these CALHIV. Therefore, it is important to implement patient-centered TB and TPT services for CALHIV and their caretakers, so as to improve TPT initiation and completion, ultimately, reducing TB burden in this high-risk population.

Recommendations

Provision of clear information about TPT and TB, psychosocial and adherence support, adolescent-friendly TB-HIV services, and integration of TPT delivery into ART delivery models, are promising strategies to improve the uptake and completion of TPT among children and adolescents living with HIV in high TB-HIV burden settings like Uganda. TPT completion is likely where services are offered within a family-centered approaches to enhance psychosocial support for adherence. We recommend integrating TPT delivery into existing ART delivery approaches, at health facility and community level, to enhance uptake and completion of TPT among CALHIV.

Data availability

The data that support the findings of this study are available on request from the corresponding author Dr Pauline Mary Amuge (PMA) [email protected], and the institutional representative [email protected] This is to ensure that the data is shared within the provisions of the protocol approved by the Makerere University School of Medicine research and ethics committee, as it was aimed to accomplish specified study objectives.

Abbreviations

Assisted Partner Notification

Anti-retroviral therapy

Anti-retroviral drugs

Children and Adolescents Living with HIV

Severe Acute Respiratory Syndrome due to Corona Virus-19

Differentiated Service Delivery

Differentiated Service Delivery Models

Human Immune-deficiency Virus

3months course of Isoniazid and Rifapentine

3months course of Isoniazid and Rifampicin

Integrated community case management

Isoniazid (isonicotinylhydrazide)

Isoniazid Preventive Therapy

Interrupted time series

Latent Tuberculosis Infection

Ministry of Health

National Drug Authority

National Tuberculosis and Leprosy control Program

Bacteriologically Confirmed Pulmonary Tuberculosis

Clinically Diagnosed Pulmonary Tuberculosis

People Living with HIV

Pulmonary Tuberculosis

Tuberculosis

Tuberculosis Preventive Treatment

Village Health Team

World Health Organisation

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Acknowledgements

Baylor College of Medicine Children’s Foundation-Uganda: Henry Balwa, Susan Tukamuhebwa, Rachel Namuddu Kikabi, Florence Namuli, Kizito David, Wasswa George, Rogers Nizeyimana, Geofrey Musoba, Alex Tekakwo, Brenda Nakabuye, David Mpagi. Joint Clinical Research Center (JCRC) Lubowa: Flavia Nakato, Joan Nangiya, Henry Mugerwa, Drollah Ssebagala. Makerere Joint AIDS Program (MJAP) Mulago ISS Clinic Kampala Uganda: Douglas Musimbago, Fred Semitala.

This work was supported by the Collaborative Initiative for Paediatric HIV Education and Research (CIPHER) grant programme at the International AIDS Society (IAS), through the CIPHER Research grant awarded to PA for the period 1st November 2021 to 31st October 2023, for a project titled “Differentiated delivery of tuberculosis preventive treatment (TPT) within existing health facility and community HIV care models to improve TPT uptake and completion among children and adolescents living with HIV in Uganda following the COVID-19 pandemic.”

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Pauline Mary Amuge, Moses Mugerwa, Dickson Bbuye, Christine Namugwanya, Angella Baita, Peter James Elyanu, Patricia Nahirya Ntege, Dithan Kiragga & Adeodata Rukyalekere Kekitiinwa

Department of Social Aspect of Health, Medical Research Council, Uganda Virus Research Institute and London School of Hygiene and Tropical Medicine, Kampala, Uganda

Denis Ndekezi

Department of Research and Clinical Care, Joint Clinical Research Center, Lubowa, Wakiso, Uganda

Diana Antonia Rutebarika

Medical Department, Makerere Joint AIDS Program-Mulago ISS Clinic, Kampala, Uganda

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African Population and Health Research Center, Nairobi, Kenya

Agnes Kiragga

National Tuberculosis and Leprosy Program, Ministry of Health, Kampala, Uganda

Moorine Peninah Sekadde

School of Medicine, Johns Hopkins University, Baltimore, USA

Nicole-Austin Salazar

Global TB Program, Baylor College of Medicine, Houston, USA

Anna Maria Mandalakas

Department of Paediatrics and Child Health, Makerere University Johns Hopkins University (MUJHU) Care Limited, Kampala, Uganda

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Contributions

PMA conceived the original concept. The funding was secured by PMA, PJE, PNN, ARK, AK, AMM, PM. The study was designed by PMA, PJE, MSP, AG, NAS, AMM, PM. Data was curated by PMA, DN, AB, DB, MM, CB, LK and CN. The data was analysed by DN and PMA. The project was co-ordinated by PMA, DN, MM, DB, DAR, and CB. The project technical advisors and mentors were; PJE, AK, ARK, AMM, NAS, MSP, AMM, PM. The original manuscript draft and responses to all author comments were written by PMA and DN. All authors reviewed and edited the original manuscript draft before submission. PMA and DN addressed all comments, and revised the manuscript. All authors reviewed and approved the final manuscript for publication.

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Correspondence to Pauline Mary Amuge .

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Ethics approval and consent to participate.

Written informed consent was obtained before data collection from participants aged ≥ 18 years, and parents/carers of children under 18years. Written informed assent was obtained from children aged 8years to under 18 years. All data were stored on encrypted computers. Filed notes and signed participant-informed consent forms were kept in a locked drawer at the study site. Participants’ names were not recorded anywhere during data collection. Each participant was given a unique identifying number to ensure confidentiality. The research teams did not include any identifying information that could have harmful consequences for the participants. Ethical approval was granted by the Makerere University school of medicine Research and Ethics Committee (17th June 2020, REF 2020 − 127), and the Uganda National Council for Science and Technology (12th November 2020; HS768ES).

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Amuge, P.M., Ndekezi, D., Mugerwa, M. et al. Facilitators and barriers to initiating and completing tuberculosis preventive treatment among children and adolescents living with HIV in Uganda: a qualitative study of adolescents, caretakers and health workers. AIDS Res Ther 21 , 59 (2024). https://doi.org/10.1186/s12981-024-00643-2

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Debate continues around the meta-synthesis of qualitative research due to the specificity of context and participant population, wide range of methods employed, varied theoretical underpinnings, and appropriateness of drawing generalizations (Dixon-Woods et al., 2006; Saini & Shlonsky, 2012; Thomas & Harden, 2008).However, synthesizing a collective body of qualitative research enables a rich ...
Social Work Research Methods: Learning by Doing
KEY FEATURES: A "learn by doing" approach woven throughout the text helps students apply knowledge to practice. A three-part structure introduces the fundamentals of research methods, the different types of social work research, and the use of data analysis for evaluation of social work practice.
Back to the Future: Using Social Work Research to Improve Social Work
Abstract This article traces themes over time for conducting social work research to improve social work practice. The discussion considers 3 core themes: (a) the scientific practitioner, including different models for applying this perspective to research and practice; (b) intervention research; and (c) implementation science. While not intended to be a comprehensive review of these themes ...
Foundations of Social Work Research
Describe the role that theory plays in social work research . The terms paradigm and theory are often used interchangeably in social science, although social scientists do not always agree whether these are identical or distinct concepts. ... Table 2.2 Four social work theories as related to the study of substance abuse; Theory: Focuses on: A ...
What Are The Theories & Practice Models Used in Social Work?
List of Theories Used in Social Work. As a social worker, more knowledge can lead to a more informed approach, and more effective client interactions. Here, we'll dig into decades of research to share a comprehensive set of social work theories and practice models, including: Systems Theory. Behaviorism and Social Learning Theory.
Research Methods for Social Work: A Problem-Based Approach
Welcome to the SAGE Edge site for Research Methods for Social Work, 1e!. Research Methods for Social Work: A Problem-Based Approach is a comprehensive introduction to methods instruction that engages students innovatively and interactively.Using a case study and problem-based learning (PBL) approach, authors Antoinette Y. Farmer and G. Lawrence Farmer utilize case examples to achieve a level ...
LibGuides: Sage Research Methods: Social Work
The Handbook of Social Work Research Methods by Bruce A. Thyer. ISBN: 9780761919063. Publication Date: 2000-12-29. This volume is the definitive resource for anyone doing research in social work. It details both quantitative and qualitative methods and data collection, as well as suggesting the methods appropriate to particular types of studies.
SW 4100: Social Work Research Methods: Research Methods
Researchers can explore methods concepts to help them design research projects, understand particular methods or identify a new method, conduct their research, and write up their findings. A series from Oxford University Press. In print at the library. In three volumes, this handbook provides information on tools used in psychology research ...
9.4 Types of qualitative research designs
Focus Groups. Focus groups resemble qualitative interviews in that a researcher may prepare a guide in advance and interact with participants by asking them questions. But anyone who has conducted both one-on-one interviews and focus groups knows that each is unique. In an interview, usually one member (the research participant) is most active ...
Social Work Research: Concept, Scope
Concept. Purpose of social work research is to produce new knowledge or to increase already available knowledge in the field of social work. Social work research gives new dimensions to social work techniques and methods and provides new ways to deal with problems. Social work research attempts to highlight insights about what intervention or ...
(PDF) Social Work Research and Its Relevance to Practice: "The Gap
First, extant literature has explored practice research's challenges in social work (Valentino and Juanico 2020;Uggerhøj 2014), yet few studies have examined organisational opportunities to ...
Social Research Methods: Qualitative and Quantitative Approaches
According to Neuman (2011), qualitative research refers to inductive, systematic, analytical, and process-oriented approaches for understanding, analyzing, explaining, and creating a phenomenon or ...
Theories Used in Social Work Practice & Practice Models
The model includes seven stages: assess safety and lethality, rapport building, problem identification, address feelings, generate alternatives, develop an action plan, and follow up. This social work practice model is commonly used with clients who are expressing suicidal ideation. To learn more about SocialWork@Simmons, request information ...
SLWK 380
Research Methods; Tests and Measures; Literature Reviews; Course Tutorials; ... Indexing and abstracts for journals dealing with all aspects of the social work field, including theory and practice, areas of service, and social issues and problems. Produced by the National Association of Social Workers (NASW).
Social Work Research Using Arts-Based Methods on JSTOR
With international contributions from experts in their fields, this is a welcome overview of the arts in social work for anyone connected to the field. 978-1-4473-5791-9. Social Work. This book explores the rationale, methodologies, and results of arts-based approaches in social work research today.
Social Work Research Methods: Qualitative and Quantitative Approaches
Adapted from Neuman's best-selling text, Social Research Methods, this text shows students that social work research does not take place in a vacuum that the social and political context of the social work field will affect how they conduct their research. Balanced between quantitative and qualitative approaches to research, this new text ...
Teaching Note—Antioppressive Pedagogy in Action: The Undergraduate
The project of engaging undergraduates in research methods courses is an outstanding challenge for social work educators (Augustine & Aly, 2020; Teater et al., 2017). ... This teaching note offers reflections and experiences about developing an undergraduate social work research methods course that uses antioppressive pedagogies to create ...
Briefing notes for researchers
talking to other health and social care professionals such as community development workers, social workers, health visitors, GP practice managers; ... Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project ...
Plan your research project
Adopt a critical approach to research Note: This section is still in-progress and based on the work of our talented colleague, Dr. Leo Lovemore! The Brown University Library facilitates and supports critical research practices that ask how bias, power, and uneven access to resources are at work in the labor of scholarship.
Detecting and Explaining Emotional Reactions in Personal Narrative
The first half of the thesis covers our work on detecting emotional reactions, where we focus on a particular, understudied type of emotional reaction: psychological distress. We present our original dataset, Dreaddit, gathered for this problem from the social media website Reddit, as well as some baseline analysis and benchmarking that shows ...
Journal of Medical Internet Research
Background: Social media platforms are increasingly used to recruit patients for clinical studies. Yet, patients' attitudes regarding social media recruitment are underexplored. Objective: This mixed methods study aims to assess predictors of the acceptance of social media recruitment among patients with hepatitis B, a patient population that is considered particularly vulnerable in this ...
Facilitators and barriers to initiating and completing tuberculosis
Introduction People living with HIV (PLHIV) have a 20-fold risk of tuberculosis (TB) disease compared to HIV-negative people. In 2021, the uptake of TB preventive treatment among the children and adolescents living with HIV at the Baylor-Uganda HIV clinic was 45%, which was below the national target of 90%. Minimal evidence documents the enablers and barriers to TB preventive treatment (TPT ...

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Social Work Research Methods by Allen Rubin LAST REVIEWED: 14 December 2009 LAST MODIFIED: 14 December 2009 DOI: 10.1093/obo/9780195389678-0008

Foundations of Social Work Research

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